I have been suffering with what I think may be Fibromyalgia for a little over a year now.

It all started out with muscle fatigue when walking, sometimes just across the room, or lifting my arms above my head for more than a couple of seconds. And jaw pain when first starting to chew food. Then I starting having bowel problems and weight gain.

I went through a bout of depression because things became stressful around here since we are self-employed and my health was going on a downhill slide. I was on Paxil for a few months but I quit it because I realized that in order to not be depressed you have to learn to take one day at a time and not let things get to you so I quit taking them and I have done good without it for over 6 months now.

For a long time, that was the only symptoms I had. I even quit drinking Diet Pepsi after drinking it since around the early 90's, I thought I might have had aspartame poisoning. Quiting the Diet Pepsi didn't help though.

Anyway, I felt about the same for a while until my husband decided he needed my help out in the shop rather than my normal office duties. He had in his mind that if I got up and did more then I would feel better. Oh how very wrong he was...although I wish it could have been true!

Well, I have been working out there for about 3 months now and it has taken its toll on me... the work is not easy... things like grinding steel, drilling, sanding, sandblasting and various other duties that I consider light compared to those. Don't get me wrong... I am a strong person. I have muscles that some men might wish they had.

As soon as I started working out there, I started getting shooting or snapping pains everywhere but not the same place each time, and I get pains that feel like they are deep down in my bones mostly in the long bones of my arms and legs, I have joint pain mostly in my fingers, I have back pain, hip pain, neck pain, shoulder pain. The pains are not constant and move from right to left or top to bottom. After I sit for a few minutes I get so stiff I can barely walk across the floor... even the bottoms of my feet feel stiff. Once I walk it off a bit, then I am okay. So this makes it hard to even take a break.

Anyway, so I went to my doctor. I don't have health insurance but I feel like I need to find out what the heck is going on. I had a nurse practioner suggest to me that it might be Fibro so I suggested that to my doctor when I went to see her. Well, she decided not to do any test of any kind but rather refer me to a Neurologist... which I am still waiting on to call me to make an appointment.

Since, in the back of my mind, I think it is Fibro I started reading up on it and found this board. What I see mentioned is that Fibro patients are treated by a Rheumatologist not a Neurologist. This has me concerned because like I said I don't have health insurance and we are tight on money so I don't want to waste my money on unneeded things. Should I be seeing a Rheumatologist instead. I have to be referred a normal doctor in order to get in to see a specialist. Should I get a second opinion from another normal doctor first?

And I guess before those questions can be answered. Does it sound like I may have Fibro? Or something else?

Thanks for listening!

Hi Moon.. welcome to the Fibro board. Hope you'll stay around here for a while, there's a lot to learn here, and many kind words and a ton of support.

I was a work a holic for years, then fibro took over. It started with fatigue, then different areas would cause enough problems it became really hard to work. I had to quit jobs, take a leave for a month or 3, then get another job. Each one lasted about 4 months before I was once again having problems with having enough energy, and some area of my body wasn't cooperating. My last job was the easiest job of all, but long hours and brutally difficult to do when my feet were the body part that went out on me... burning, aching, cramping. I couldn't walk between my posts without slow, obviously pain filled steps. I was working in a prison at the time, and if you can't move quickly, you become a target. I quit when I realized I was getting scared. I have not been able to stand for longer than 15 or 20 min without my feet screaming at me to get off them, and I generally cannot walk on them for more than 45 minutes or so to shop for groceries. If I don't have a shopping cart... I don't shop at all...need the support. ( I don't really understand it.. walking, the massaging affect, seems to be so much easier than standing in one position)

Your symptoms sound very much like what I deal with on a daily basis, and there are many more here who will agree that it sounds like something they are going through also. I can't diagnose you, but I can tell you that what you have heard is correct. The most qualified doctor to diagnose Fibromyalgia is a Rheumy... the latest news is that Fibro has been lumped into the rheumetoid catagory, along with arthritis and other similar disorders. It is also called an autoimune disorder, and a neurological disorder, and a hormone disorder. It has many names, but all are just as depressing. lol

A Neurologist can diagnose this, but the better choice would still be the Rheumatologist if you can manage it. Hope this is helpful, and I wish you all the luck in the world in managing without the insurance. Maybe someone else can give you some good leads on that aspect. ;)

I am the same way at the grocery store. If it weren't for the shopping carts I would never make it to get what I need. I even have a real hard time walking back and forth from our house to the shop... heck sometimes just walking to the kitchen is a chore. I also can't stand in one spot or be in one position too long because not only do my feet hurt, my back gets to hurting so bad I can't stand it too.

I forgot to mention earlier that my memory isn't what it used to be either. Sometimes I just zone out and can't for the life of me remember what I need to be doing. I guess that could be FibroFog.

I think the reason that my doctor referred me to a Neurologist is because she said that most Fibro patients do not have the muscle fatigue from walking or raising the arms up to reach for something. She said they have mostly pain.... not fatigue. She said some may but most don't. Is she right?

If the Neurologist can diagnose me then I will stick with that route so that I don't incur the expense of a different doctor.

I should be in bed now but I was hurting too much to sleep and had to get back up. My doctor did give me some Vicodin and so I had to take one in hopes it will help me sleep in a few.

Thanks for replying to my post.

Hi Moon,
I believe you have entered the Fibro Zone:D Those symptoms are classic. While the neuro may be able to make the call, my personal opinion is the rhume would be better. Just make sure a complete blood panel is done, covering all the bases. They don't call it fibro because of what they find but because of what they don't find. It doesn't help the pain but it does give a piece of mind to know that you aren't going to die from something that can be found. This mess is awful but I haven't heard of it killing anyone yet.(Although there are days when I could swear I'll be the first:jester:) It helps mentally to know that.

Hang around here. It helps to know that other people get it and don't think you are lazy, wimpy, or just plain nuts.

"Hang around here. It helps to know that other people get it and don't think you are lazy, wimpy, or just plain nuts."

That is what my husband and family thought when it first started. I think I finally convinced my husband that he is wrong, although there are times that I just don't know what he is thinking. I am not so sure about my daughters, they don't live here so they don't see me in agony all the time. I have tried talking to them but I get that far away look when I do try to talk about it so I know they don't want to hear it. They are 26 and 16.

This looks like a great board. I am going to add it to my favorites. Thanks!

Welcome Moon!

You will find many great things here--sources of information, compassion, empathy and friendship.

While it is true that most fibro patients do not experience muscle fatigue as you described but rather unexplained pain and overall fatigue, that does not mean you don't have it. It manifests itself in so many different ways in all of us, and unfortunately, there is no one definitive test to diagnose it.

I hope you find a doctor who can help you. I agree a rheumy is better than a neurologist, but a good internist may be even better....depending on the rheumy. Try to keep a log of how you're feeling each day, along with what you eat, how much you sleep, etc. It may help find things that trigger your pain (other than the obvious physical exertion) and help the doctor treat you more effectively.

Good luck, and let us know how you're doing.

Again, welcome!

Blessings,
Tex

hi there newbie! i am a newbie myself, all i can say is dont give up. Keep geting blood work done. like some of the others said, you have all the simptoms, that i have. i am glad someone said somthing about memory, i was just telling my daughter last night. i think i am going nuts! cant remember from one second to next. also wish i could have one morning i did not wake up feeling like someone beat me up all night. it stinks. i also used to do so much more, i worked 32 hrs a wk, i quit last sept. i did just get ss. i am so grateful. but still feel useless alot. glad my sister introduced me to this sight, i think it will help to here other stories. good luck in getting diognosed. dont give up:) deb jeepi

I too agree with you that if you don't have medical insurance coverage you have to be extra cautious on the visits you have with drs. you don't want to be referred to a dr that doesn't deal with your issues.
I myself was JUST referred to a neruologist for severe memory problems, spelling words wrong, not remembering words, and switching letters, etc. I can't even rememember which is the hot water tap vs. the cold and it's only getting worst since 2000, and the first thing this dr said to me was, I don't deal with memory loss and neurologists deal only with strokes and brain tumors. these were her very words. I'm not kidding.
I asked myself, then why the heck did my dr refer me to her?
it was such a waste of time and money.
she checked my reflex with one of those metal bars and made me point my finger to her finger and then to my nose.
that's it. that's all she did. she told me I was fine and that if I was still concerned that there is medical establishemnts I could go to in NYC for just this problem.
I just give up.
I think it's a combo of the fibro I have, plus the med's i'm on.
my blood work is pending for B12 .

I do think you have the symptoms of fibromyalgia and you will know when the rheumy dr presses on certain points of your body. it will hurt very bad.
there are many points on the body that when pressed will determine it.
there is no blood tests at this point yet to test for fibro,
that's why people don't get accepted for disablity on this dibilating and painful illness.
I suffered for years not knowing what I had. only when I came to the health boards and spoke to the people on this board did I condsider telling my dr. and low and behold, the rheumy dr found it.
I was beginning to sound like i was a hypochondriac.
it's effected my life to hte point wehre I can't even do any type of work that involves using my muscles. no more gardening and stooping over to lift weeds, not cutting back bushes. I couldn't even spare being attacked by having to cut and manicure my father in law's toe nails who's had a stroke. he's 85 yrs old and has no one to come and do his nails. so I do it.
it takes me a good hour and a half for the entire process. I have to bend down, and also sit on my knees and in positions so that I can reach the foot.

all my muscles were in burning agony for 3 days afterwards. the upper muscles in my thighs hurt so much to the point where I couldn't even sit down on the john wihout screaming in pain.
I knew something was wrong years ago, but m family dr. never did anyting about it.
I too couldnt' keep my arms lifted above my head to grab things off the shelves for any length of time either.

and guess what? after the rheumy dr put me on medication to help my fibro pain and I went back for my follow up visit, I told him I wasnt' feeling better and just as I was feeling defeated and standing up to leave, he asked me if any dr's ever did a vitamin d deficiency test. my answer was"no".
well he did, and I'm sure as heck glad he did, because mine was very low and he put me on D supplemtns for a length of time and guess what?
all my bone pain I suffered at night and the hurting neck to turn my head while driving went away.
I thoguth it was just the fibro I was suffering but actually had two things going on.
I think the lack of D also contributed to the bone loss I was having. I was toldl I have osteoarthritis in my spine, my neck, now my fingers and the joints of my toes, and I also was dx'd with having osteoporosis and I'm only 47 yrs old. I could NOT believe what was happening to my body.
so I think it was all related to my bone loss from the vit. D defiency too.
thank God they found out I had it.
otherwise I would have only got worst. It got to the point where I couldnt' even walk up a tiny hill at my job on lunch break. I was so exhausted by mid morning and all the aches and pains I suffered.

I try to make all woman aware who have fibromyalgia to also get their vitamin D test performed.WE all need this very important vitamin to be at normal levels in order for our bodies to perform on a good functioniong level.
look what happened to me?
so hopefully by posting this, it will make others aware and maybe help others.
sincerely,
Linda

What specialty the doctor is nowhere near as important as whether or not the doctor believes fibro is real. There are still hundred of thousands of docs in this country who think it's all in our head. Rheumys, neuros, internists and family practice included.

I'm a big fan of internists. They're qualified to treat a HUGE range of diseases and symptoms. With the exception of surgeons, family practice, rehab/PT, OB/GYN and pediatrics, EVERY SINGLE OTHER SPECIALTY is an offshoot of internal medicine. That includes rheumys, neuros, GI docs, pulmonary, kidneys, urology. All of them. They become internists first and then they go and specialize in a certain area of internal medicine.

So if you get in with a good internist, he can treat just about anything you're likely to develop or come down with. My dad is an internist, but he also acted as a cardiologist, oncologist, GI and pulmonary when we lived in a tiny rural town. He can put pacemakers in and do a bronchoscopy. Now he's an intensivist which means he works full time in the ICU taking care of the really sick people who have a ton of different things going on at the same time.

An internist is also trained to treat conditions with medication and to manage multiple medications for multiple problems. And since so many FM patients are on so many meds and we tend to have multiple other problems too, an internist really is the best choice because he will be familiar with every drug you're taking. If you're seeing 3 different specialists, each specialist will only pay attention to the meds they're prescribing. There's nobody watching all of them to make sure nothing is happening.

yes grapedy,
I used to say to other people that internists are "detectives of medicine".

I thought they have more schooling than other types of doctors. I find them fascinating. they dont' give up until they get the answer.
on the other hand, my internist is always referring me to specialtists and doesn't want the time of day to do the job on finding out what it is himself.

it must be GREAT to have a father as an internist. Free evaluations and medical care. LOL

Are you interested in becoming a dr. as well?
I see often in the town I live in that the children of doctors also go into the field of medicine.

I've always had a drive and passion for science and the medical field myself. I used to sit indian style on the hard linoleum floor of our living room back when I was very young this very thick family medical book.
how to treat common ailments and such.
they had this section to teach you about the anatomy of the body and how the organs work.
it had clear plastic pages that had organs printed on them that sat over a page of the human body. ever since then, I've been reading any type of medical info I can get my hands on. after all, that's the main things one has to do when going to med. school, is to read, read, read and to take notes and then be tested on their memory. this is only the small part of learning of course. i do realize their is much more extensive learning besides reading. that's just an example of where it all begins.
what makes people interested in becoming a doctor or to work in the medical field? where does it begin? you have to start young of course, right out of high school because you have to go to school for so many years and then to do intern work in hospitals in every department of medicine. correct me if I"m wrong. then they go on to decide what practice of medicine they want to do, right?



I wouldn't want to be a nurse, but something in the medical field where I could help others. I find the human body a miraculous machine and it's amazing how the body can mend itself. Just the idea how the organs and glands and hormones perform seperate jobs, yet are all intertwined to work together to have peace and harmony in the body.
why wouldnt' anyone find that amazing?
some people never think about their bodies and never ask how it works. they just listen to what their doctors tell them to do and never ask questions.

my mom never asked questions. I used to ask her what the dr said after she saw her dr. and she told me she didn't know and that she was just to take her medicine.
that's the old school. it's much different today where people get involved with their health and work along with their doctor.

I heard that now that theres' such a vast array of medical information on the websites now that patients are trying to diagnose themselves and go into their doctors office telling THEM what could wrong.
a dr. once said, " Did YOU go to medical school?" and he'd go on to say, "STAY OFF THE MEDICAL WEB SITES and leave the doctoring up to me!

I"m sorry if I seemed to get off the subject here. but I found your post and reply to be very interesting regarding the difference between an internist and specialized medicine.

thank you for your information. I hope others find it helpful too.

"I heard that now that theres' such a vast array of medical information on the websites now that patients are trying to diagnose themselves and go into their doctors office telling THEM what could wrong.
a dr. once said, " Did YOU go to medical school?" and he'd go on to say, "STAY OFF THE MEDICAL WEB SITES and leave the doctoring up to me!"

Well, as you know I have not been diagnosed yet. I finally have an appointment with a neurologist but it is not until October 1st!!! No health insurance and low on funds is the reason for the long wait... I have to go to the "cheap" hospital. But anyway, I have done the same thing... trying to diagnose myself.... but I have found from past experience that it really does pay to do so! I know of someone that had Hepatitis C, he kept going to the Dr. complaining of being tired all the time and the doc could not figure anything out and I finally started researching his symptoms on the web and told him to tell the Dr to check for Hepatitis and sure enough, that is what he had.

You as the patient knows your own symptoms the best... and a lot of times the doctors just don't listen... just like my doctor, she thinks in the back of her mind that I have MS but I discounted that a long time ago after reading about it on the web... I just don't think that is what it is. I may be wrong but only time AND MONEY will tell.

I can't begin to TELL you moonlady how many times I've tried to diagnosis my self according to what I read on the web.
I think the majority of people do that.

I agree with you too that we know our bodies best and know if something is wrong. I kept urging and pushing my dr. and I must have been a pain in the rear to him and that's when he referred me to a rheumy who found out why I was having all the aches, pains, and groans.
it was the vitamin D deficiency AND the fibromyalgia and other things I have.

so see? If I hadn't gone back to the dr. and pushed him to listen to me, I would be flat down laying in my bed like I was and only getting worst.

I still look up on the web and that's why I'm here.

( smile) L.

It all started out with muscle fatigue when walking, sometimes just across the room, or lifting my arms above my head for more than a couple of seconds.........................I think the reason that my doctor referred me to a Neurologist is because she said that most Fibro patients do not have the muscle fatigue from walking or raising the arms up to reach for something.


Welcome, Moonlady.:) It certainly sounds as if you have many symptoms consistent with fibro, but I quoted the above excerpts from two of your posts because the exact symptoms that you mentioned plagued me for several years before I was also diagnosed with myasthenia gravis, a neuromuscular autoimmune disorder. (It's not uncommon for patients with fibro to have other autoimmune disorders.)

Normally, a rheumy would be the best specialist for you to see if fibro is suspected, but your proximal weakness (arms and legs) makes me think you are, in fact, better off seeing a neuro for the initial evaluation. I'm sorry that your appt. is so far off.:(

The most important thing that you can do in the meantime, in my opinion, is convincing your husband that you just can't work in the shop anymore. Good grief! The fact that you have been getting the work done for the past three months doesn't mean that you should be doing it. I'm sure it's difficult for your husband to get adjusted to this "new" you, but taking care of yourself is the most important thing you can do for you and your family.

Hope you'll stick around with us!

Hugs,
Pat

That is interesting about the mention of Vitamin D Deficiency. I wonder if I could/should get me some Vitamin D Supplements like at Walmart to take while I am waiting for my appointment. I am desperate enough to try anything!!! ;) But I have also read that too much Vitamin D is not good too so maybe I ought to ask my doctor about it first.

I was in so much pain yesterday, every once in a while it felt like someone was axing my bones on my shins and every other bone in my body at one point or the other felt like someone was drilling into them... all this on top of the muscle weakness. I don't know how else to explain it. I can barely walk anymore, I walk slow and probably look like a tard with the way I have to walk in order to get where I am going with as little pain as possible. :D It is most likely the surrounding nerves and not the bones but it sure feels like it hurts on the bone itself, sometimes a deep deep gnawing pain, other times it is sharp pains. I am feeling a bit better this morning compared to yesterday but it is still early and the most I have done is come in here and sit down at the computer.

I had to chuckle about the misspelling of words etc, I catch myself doing this also when I am typing and I didn't used to be so bad. It is not just normal typing errors, I end up typing real words but not the right words and sometimes I get the meaning of different words mixed up when even when I talk. I told the lady at the bank the other day that my dog was being gullible when in fact I meant the teller was being gullible not the dog. LOL we were at the drive through and my dog was licking her lips like crazy begging for treaties and the teller gave her two instead of just one LOL.. after I drove away and realized what I had said, I felt like an idiot.

I can't think straight half the time, yesterday for example a watermelon I had just purchased was laying on the table...the table is directly in front of the fridge. So I opened the fridge and just stared at everything in it trying to figure out why in the world I opened it... what the heck was I after, I got frustrated and I shut it and then turned around and saw the watermelon again. So I opened the fridge again, stared inside for a minute AGAIN and then I finally snapped out of that fog and grabbed the watermelon and put it in.

I think this board is great, it is nice to know that there are people out there that actually understand what I am going through. As you all know, this is so hard dealing with when it comes to family and friends because they just don't get it.

Thanks all!!

Oh, I know exactly what you mean about mixing words up or not being able to find the right one. Often I'll stop in the middle of a sentence, trying to find the next word, and it just won't come to me. If I'm on the phone with a friend or my mom, after a long pause I'll ask them, "What am I trying to say?" and they'll come up with the right word or a reasonable alternative, but I can't do that in public or on the phone with strangers. I can't imagine what they think of my halting speech, particularly since when I am able to string together a few words, I tend to talk very fast. My head would be spinning if I were on the other end!

What's great about this board is that we aren't judged if we ramble, make a lot of typos, or even not make much sense; we are loved and accepted just the way we are!:)

Yes this board is great. I know what a lot of you both are talking about, I wish family would know a little bit or take some time to understand.

I'm new to this message board...however not new to the world of fibromyalgia. Its been 16 years of symptoms. You really do feel very alone and that nobody really understands what its like...they thinks your a hypochondriac. Yeap thats for sure. Its not like you have this huge wound with all the blood and guts...and they say wow that awful you must be in so much pain. Nope...you look in the mirror and look soooo normal!!! I know all about being in severe pain, can't sometimes put a sentance together or remember a persons name that you have alway known. There are days we consider good days and even on those days it would send any normal person straight to the doctors in search of help to feel better. My muscles will fatigue when I walk up stairs...just one flight and I feel as if I just hiked hours up a steep hill. I use to be such a high energy person with a mind like a steel trap. My husband finally realized that I wasn't faking when I attemped to ski, which was my first love and a true passion(I was better than him). Well I got to the top of the mountian in Lake Tahoe pointed my ski's down hill because I was somehow in my mind going to will it away...I was like a fish out of water with in 2 minute as I attempted to ski that slope. Pain, muscle cramps, legs to weak to control my skiis. He wanted to send the ski patrol up for me however I was to proud to go that route. I finally side stepped my way off that mountain. He looked at me and said OH MY GOD WHAT DO YOU THINK IS WRONG? This was after 8 mos. of complaining and him telling me I was just stressed out and needed to just learn to calm down. GTG for now.

I get up every day and try to find something to smile about "Some day really do suck!" LOL MISHA45

I can see that we have our own experiences with fibro but it's all the same at the end, the pain. the wondering what on earth we did the day before to cause such pain on weird parts of the body.

I was driving my car this morning and I touched my scalp to push back my hair because it was flying around due to my open windows and I happened to touch my scalp right above the head where the hair begins and I could NOT believe how it hurt.
I asked myself, does this pain ever stop? do these weird type pains get worst?
what's up the road for us if there is no cure for fibro?
why didn't fibro exsist years ago? why so sudden now?

I'm wondering if chemicals from food and other things are causing such an increase in this problem.
if anyone has any info on this subject, I'm highly interested in learning about it.
maybe by knowing more about it I'd be able to cope better and not be so down when new areas pop up in pain.

my scalp though? do any of you with fibro have pain on your scalp too?
my scalp actually goes numb if i'm laying my head on my husbands chest while watching t.v. in bed.
I've NEVER in all my life ever have that problem before.

oh, and Moonlady, Please don't take the vitamin D till you know for a fact you have a defiency. maybe one a day won't hurt you, but I had to take alot of it in order to replace what was lost.

it's amazing how just taking a vitamin or supplement works so quickly to restore the vitamin D.
well, I"m learning new things even at the age of 47.
each day is a new day and I continue to hope that the medical people and scientist can discover all the info they can get on this mysterious muscle problem.

oh, and how scary Pat that you were misdiagnosed for all the years when you could have been treated for the mysanthia gravis. I forget what this is and will do a search on it.
it's very similar to fibro?
why don't rheumy dr's check for that illness when the new patient comes in with symtoms of fibro?
I"m so glad you mentioned this on the board.
see? everyone that comes and shares their personal story of what personally happened to them can really help others.

thank you ALL.

sincerely,

Linda

I noticed that you said you are low on funds and no insurance. Have you tried calling a rheumatologist and asking about a cash discount or if they are willing to help you with your financial situation? The worst thing they can say is no. Make sure the doctor you visit knows that you are tight on cash and have no insurance. Some doctors are a lot more willing to give samples and other things if they know this. It's just a suggestion...might help...might not.

It does indeed sound like fibro. You should definitely go see a rheumatologist if possible. I have a question: Why do you have to get a referral from your internist to see a rheumy if you pay cash? Maybe I'm confused (which is entirely possible with my fibro brain).

I would recommend buy a few books on fibro if you can afford it. Amazon has a large selection and doing that really helped me understand the illness.

You should also probably get tested for Lyme Disease just to rule that possibility out. The symptoms of Lyme and Fibro overlap a lot.

Oh and get a heating pad...it will be your bestfriend. Good luck.

Wow!
You guys are a fountain of info.:dizzy: I'm having trouble remembering what I was going to say:o Oh, yeah, lintek45, you mentioned chemicals, well I don't know if anyone else has found this with them but I can not drink anything with carbonated water (sodas) anymore. When I do bad things happen like a lot of tingling and burning. Also, I have to limit my use of white potatoes. Other starches don't bother me and neither do sweet potatoes but too many white ones and I'm hurting bad. Wait, I just realized you were asking about possible causes not triggers. Ops, sorry.:o Anyway, you also mentions the scalp pain. I get it a lot. Sometimes it even comes with burning and whelps with it. Don't know if that is the fibro or my "generalized inflamation syndrom".

Newbie asked about the D your on. I agree about not taking it until you know, can cause problems like kidney stones for example. Low fat or fat free milk and at least 15 min a day of sunshine will increase D without risk in the mean time and both are good for you.( Even those of use who take meds that make long times in the sun a no no can take 15 min.).

It is sooooo goooood to talk to other people who understand. Even though we have different other medical problems, are different ages, have different jobs,
etc. everyone here knows what it's like to never have a day without some kind of pain. Everyone knows what it's like to be thought of as a nut case. We also know the importance of encouragement. This is why I check this board more often than I do my email these days. YOU GET ME!!!!:cool:

I think the reason I have to have a referral is because it is the "cheap" hospital and they typically go by your wages and they want to weed out people wanting to see a specialist, just because they think they need to. From what I understand, they want a doctors opinion first.... or something like that. They absolutely would not schedule the appointment until they had all the supporting documents from my doctor.

I had a bit of sun today so that should boost my vitamin D, I will wait to take supplements until I talk to my doc, thanks for the advise!!!

I actually felt pretty good for the biggest part of the day today, walking half way normal without pain and able to perform other duties without a lot of pain. It was nice while it lasted because now I am feeling pains again. :(

I hear ya moon. I felt pretty good this morning and went and mowed half the yard. Now my arm from my shoulder to my hand is killing me. I have one of those self propelled push mowers, the problem is that lever you have to squeeze to keep it moving. That thing has really caused me so problems. Pecking on the keyboard right now. It's in my dominate arm, wouldn't you just know it.:(

Donna

I was driving my car this morning and I touched my scalp to push back my hair because it was flying around due to my open windows and I happened to touch my scalp right above the head where the hair begins and I could NOT believe how it hurt.

my scalp though? do any of you with fibro have pain on your scalp too?
my scalp actually goes numb if i'm laying my head on my husbands chest while watching t.v. in bed.
I've NEVER in all my life ever have that problem before.


oh, and how scary Pat that you were misdiagnosed for all the years when you could have been treated for the mysanthia gravis. I forget what this is and will do a search on it.
it's very similar to fibro?
why don't rheumy dr's check for that illness when the new patient comes in with symtoms of fibro?
I"m so glad you mentioned this on the board.
see? everyone that comes and shares their personal story of what personally happened to them can really help others.

Oh, I definitely can relate to your scalp pain, Linda! Sometimes just the movement of my hair when I'm in the wind or blow drying it can cause my scalp to hurt, even without touching it. The skin on top of the large bones behind my ears hurts a lot, too.

Until your post, I had never told anyone about my scalp pain because it just seemed too "weird". I guess there's no such thing as too weird on this board, and we should all continue to mention even the craziest of our symptoms, in case someone else is experiencing the same thing and then won't feel so alone.:angel:

I excerpted the following from the website of the National Institute of Neurological Disorders and Stroke, a division of the National Institutes of Health:

>>Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Muscles that control eye and eyelid movements, facial expression, chewing, talking, and swallowing are often, but not always, involved. The muscles that control breathing and neck and limb movements may also be affected.

Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. In myasthenia gravis, antibodies produced by the body's own immune system block, alter, or destroy the receptors for acetylcholine. The first noticeable symptoms of myasthenia gravis may be weakness of the eye muscles, difficulty in swallowing, or slurred speech. Symptoms vary in type and severity.<<

My MG started with double vision that became worse over the years. (It's fairly constant now.) Then my arms and legs became affected. My case is considered mild, because I do not have breathing problems nor am I confined to a wheelchair. Medications I have tried have not helped. My neuromuscular specialist said that patients with "mild" cases tend not to respond to treatment as well as patients with more severe cases. Go figure.:rolleyes:

I think rheumies don't look for MG because there is no pain or inflammation associated with the weakness. Rheumatological disorders tend to cause patients significant physical discomfort.

(((Hugs)))
Pat

Wow Pat,
I'm so sorry to hear that you have this autoimmune disease.
How on earth did they diagnosis it?
and you suffered for years thinking it was fibro?
what medication do they RX when the symptoms get worst?
how long is the time period before it increasing gets worst?
do they have an approximated time period going by other patients? or is it different for everyone?



I am SO relieved to hear that someone else's scalp hurts too.
I was beginning to think I was NUTS!
I dont' think this feeling is one of the spots that's supposed to hurt when being diagnosed with fibro.
but I guess it can strike any part of the body because they don't much about it. I can't believe they used to think it was just in peoples head and that they were referred to see a shrink rather than an internist.
how degrading, not to mention insulting.
It can actually make me sick where I feel I have the flu. My head feels fuzzy and I'm very listless and I can sleep half a day away with no problem.
but.... if I lay in bed too many hours, the pain in my lower back hurts so much, that I"m FORCED to get out of bed so it can stop hurting.
I tell ya, I haven't had a good nights rest in a couple of years. due to my very vivid nightmares and dreams. I have at least what seems like 7 dreams per night. which makes me feel I'm not getting rest in my mind.
I have no peace.
do you have this too?
oh and I just wanted to say you're a doll for giving me the definition of what m.g. is.
I had to get off the computer right after I posted that I was going to google it.
thank you for taking the time to do this for me and all the others.
you're so sweet.

what do you do during the day for activity or hobbies?
do you go out for walks to get a little exercise?
I can't motivate myself to do any form of exercise and I am tired of making promises to myself I can't keep.
I think I feel guilty about everything. LOL

sincerely,
Linda

Hi, Linda~

I don't want to spend too much time on this board discussing MG, but in a (rather large) nutshell:

Because of my double vision, I was referred to a neuro-ophthalmologist, who ran the antibody test for MG, which was negative. He also ordered a CT scan of my chest--sometimes a tumor of the thymus gland (whatever that is) causes MG--which was negative. The next step was an EMG, also negative. He prescribed the first line of defense drug for MG, which didn't help with the d.v. or anything else. (Prednisone would have been another option but I can't take it.) He referred me to a local neuromuscular specialist, who thought my case was limited to the eye muscles. I disagreed. But he did have me try an immunosuppressive drug, which also didn't work. This seemed to reinforce his theory that I had only ocular MG.

Then I went to a teaching hospital in NYC for a single-fiber (SF) EMG, which is more sensitive than a "regular" EMG. It was mildly positive. The NJ n/m guy referred me to a n/m specialist at another NYC teaching hospital. He didn't think the first SFEMG was positive, so he did his own. He thought the results of his test were more definitively positive:rolleyes: (but still in the "mild" range). I continued seeing him for routine visits. My condition hasn't gotten much worse over the last couple of years. The symptoms of most patients will progress to their maximum severity in three-to-five years, so I am pretty sure I'm the worst I'll ever be--at least with regard to my MG!

Oh, there are other treatments for more serious cases of MG, including plasma exchange and IVIG.

More on fibro later...:)

~Pat

Are you interested in becoming a dr. as well?

Oh heavens no!! You couldn't pay me enough to be a doctor these days. That was the one field he always discouraged us about going in to. I spent so many years working in his office dealing with Medicare crap, Medicaid crap and HIPAA crap that it's just not worth it. I don't have the passion to be a good doctor, plus I'm terrible with people. Soooo not a people person! I worked as his nurse/assistant for 3 years and by the time he closed his practice I'd had it up to my eyeballs with people and Medicare regs. Working in a doctor's office is something I will never do again for anything less than $15 an hour. And even then it would take a really good benefits package to snag me.

And there is no way I would ever consider going to nursing school. I briefly thought about going out for an LPN license, but scrapped the idea after about 48 hours. Medicine is not what it used to be and I want no part of the direction it's heading in this country.

Not to mention FM and nursing/being a doctor don't exactly get along, lol.

It can actually make me sick where I feel I have the flu. My head feels fuzzy and I'm very listless and I can sleep half a day away with no problem.
but.... if I lay in bed too many hours, the pain in my lower back hurts so much, that I"m FORCED to get out of bed so it can stop hurting.
I tell ya, I haven't had a good nights rest in a couple of years. due to my very vivid nightmares and dreams. I have at least what seems like 7 dreams per night. which makes me feel I'm not getting rest in my mind.
I have no peace.
do you have this too?

what do you do during the day for activity or hobbies?
do you go out for walks to get a little exercise?
I can't motivate myself to do any form of exercise and I am tired of making promises to myself I can't keep.
I think I feel guilty about everything. LOL



I often have that coming-down-with-the-flu feeling. I think it's fairly common among fibro sufferers.

I sleep way too much, but at odd hours. I'm up half the night, but I usually don't get out of bed for the day until noon or 1 p.m.:o And I usually take a "nap", or at least lie in bed for an hour or two, in the evening.

I have vivid and nightmarish dreams, too. One of the symptoms of fibro is disturbed sleep, which I think contributes to abnormal sleep-dream cycles.

This is what I do during the day:

1. Eat breakfast.
2. Play on the computer.
3. Do one or two easy chores.
4. Eat Peppermint Patties.
5. Play on the computer.
6. Take a break--lying in bed, text messaging, reading, playing hand-held Free Cell, sleeping.
7. Eat Peppermint Patties.
8. Do another easy chore.
9. Play on the computer.
10. Eat Peppermint Patties.
11. Return to bed for above-mentioned activities.
12. Eat combined lunch-dinner.
13. Do another easy chore.
14. Eat Peppermint Patties.
15. Return to bed for the night, foolishly anticipating that "tonight" will be the night when I fall asleep before 4 in the morning.

Exercise?:eek:

And guilt? Oh, yes, tons of it.:( I often feel as if I am just taking up space and air. And keeping the Hershey Co. in business with my massive consumption of Peppermint Patties.:bouncing:

Pat,
You're so funny and cute. I died laughing about the peppermint patties.
Mine happens to be cakes, cookies and ICE CREAM, or better yet, just about any type of sweets.
It's rewarding to me and I look forward to it all day knowing I'm going to have my goodies while I lay in bed watching t.v.

I had NO idea that the fibro can be the cause of my vivid nightmares and dreams that are like being at my own movies.
I wish there was something I could take to stop these horrible dreams so I can at least get a good nights rest like I used to.
I never remembered my dreams before I became ill. which was a good thing, and which meant I was sleeping solid thru the night.


now that I'm given the time to rest and restore my health by going on disability, I"m forced to have to work 8 hours a day, but now it's as being an uncertified home health aide to my father in law. it's saving them money by us being here. alot of money. home health care here in NY is very expensive.

today I am feeling very depressed that I can't even do the exercises that my 80 yr old mother in law is able to do. Our bodies are reversed. I'm really 80 yrs old like she is, and she's in my body of a 48 yr old woman. she says it's all in the mind, which I USED to agree with that theory, but no longer do now that I am ill.
when one has fibro AND arthritis, you can't just change your way of thinking and make it go away. God, I wish I COULD do that. wouldn't that be simple and cure all for millions of others who suffer in pain.
The past few days have been horrible for me.
I wake up each morning wondering what today is going to be like.
I don't know what to do to feel better.
I HAVE to prepare the meals and clean up afterwards for his father and my husband. I HAVE to prepare the dinner and all the trimmings for the supper and when his mother gets home from work.
she is so strong that she continues to work five days a week, which her hours were cut down to workinng only two days a week. she became very upset that they did this to her, but she finally won and is now getting more days because she hates being in the house. she does't want to have to cook anymore and take care of household issues.
why not have someone else do it? and NOT have to pay for it! boy is she lucky. I hope I get the same thing when I"m older.
Maybe one out of my four children's wives will take over my house like I do for them.
My therapist says I should not be here and that we should move out and have our own life and our own place.
maybe then I won't feel like I'm dying each day.
I really feel like that today. I feel like I have no future ahead of me.
how can it be a good future when you see your mate not having a problem and he has all the energy and his health and you look at me and see me being the one in some state of discomfort somewhere on my body. I'm so afraid I will make him sick of me.
each day I wake up there is a new place I have pain.
I dont' know what I'm doing wrong?
I just had to get this off my chest. I really hope things get better instead of worst.
sorry if I'm such a complainer and a downer, but these are the things that are needed to do so we can get it out and not get heart disease from holding it in. ( that's what the dr.s say anyway)

Maybe I need to change my choices of goodies and switch to pepperment patties to feel better?
I'll swap you a lollipop for one of your chocolates????? LOL

Moonlady you are amazing:angel:! I am of course praying for a cure but in the meantime I am also praying for an attitude and spirit like yours. You do me(and I'm sure everyone on here) a world of good.:cool:

Hoping for a day without pain for all.
Donna

I mentioned earlier that I would wait until I talked to a doctor before taking Vit D supplements and I was at Walmart the other day and noticed they do not even sell Vit D by itself so I guess it is only prescribed by a doc because of the dangers of taking too much... yes, I was still thinking about doing it anyway... BUT, they did have some Calcium with Vit D and I got some of that and have been taking 2 daily with meals. The first day I took it, I felt no difference, that was on Thursday, but on Friday and also today I have noticed that although I still hurt...everywhere... I don't have the sharp axing bone pains like I was having so maybe it is doing some good.

I am trying to help myself and I hope my family can see that I am trying to get better by making all these changes. I have quit drinking Diet Pepsi after drinking it for about 20 years, I have went to decaf with my tea, I have also quit eating fried foods. There are a lot of changes I still need to make... like I should eat more fruit and veggies etc. but I have to do things a little at a time as to not overwhelm myself.

I am having a tough time right now though. I have been sick since Thursday, before I started taking the Calcium, I think it is some kind of intestinal flu. I have a slight fever, 99.2, my regular temp is 97.6, and my stomach is hurting and bloated. I feel full and hungry at the same time. I am not able to eat much and just the thought of food makes my stomach churn. And I just feel like total crap. I have been taking Rolaids Plus Soft Chews which is suppose to be for gas relief and bloating, it helps some but not a lot. My bowels are moving good, not runny.. not hard... and I was just thinking this morning while having a bowel that at least there is no blood in my bowels or else then I would really be worried... now I think I have really flipped my lid!!! Because when I was finished, there was blood when I wiped. I didn't have to strain much so it is not from like being constipated. I freaked out and started bawling and then I had to convince myself that I was overreacting. That is just so weird that I was thinking it and then there it was... that is so bizarre!!

I think I am ready for the straight jacket now...:cool:

I agree with everyone on the vitamin D suppliments. My Dr. tested me and it was low so he tried to jolt it upward by putting me on 50,000 IU per day for two weeks. A lot of times they say that will help increase your productivity and help with pain. Normal Vitamin D needed daily is about 4,000 IU.

My GP then put me on CELEXA (anti depressant) which is used for some people with Fibromyalgia. My Neuroligist then put me on Lyrica. Seemed to help some. Only thing I didn't care for is the "male" side effects from the Lyrica.

Also on Fentanyl 100mcg Patches and Vicodin for breakthrough pain. These drugs were for other issues of pain in my back. So sometimes hard to tell what is really hurting.

Now six months later and I'm having a number of other symptoms like severe double vision, exhaustion, muscle weakness, trouble walking (more like a weeble) LOL. Now they are testing for Myasthenia Gravis. About two weeks ago my Neuroligist said he would get me an appointment with a neuro opthomoligist. Turns out first opening he has is Aug. 25, 2008. Might be better or a lot worse by then. :)

Pat, I like peppermint patties too. Not as much as you though. :) My favorite is eating Ben & Jerry's at night. Sometimes I'll eat a pint every night for a week. :D Luckily for me I never gain any wait. Reason for that isn't a blessing though. I also have Crohn's Disease. Got that about 2 1/2 years ago and at the time I weighed 272 lbs at 6' 3". Now I'm down to 185 lbs. My main diet is Candy, Ice Cream and take out food. Also drink 2 bottles of Ensure Plus a day to maintain. If I don't then the weight goes faster.

Also have Epilepsy. So right now taking about 25 pills a day. So this gives me a number of problems to think about what is causing the other.

Oh well, sorry to get off Fibro subject. I've really enjoyed reading this chain and knowing what everyone is going through and learning a few things along the way.

Everyone take care,
Dennis

i hear you about the scalp! i was shocked to read this on here. i have had scalp isues for years. never put it with the fibro. it can be very anoying, burning, itchy, soar, sores. i feel bad for you, but dont feel alone with this anymore. i have tried every thing nothing works1 i am open for any idea's. thanks jeep1

I vaguely remember when the dr. first was checking my body to see if all the spots he touched hurt me, I think I recall that he placed his thumbs and fingers on the back of my head on both sides of the scalp and it hurt there.
My fibro is still hurting me every day and sometimes I too am confused if I"m in all over pain because of my osteoarhtris that is spreading quickly through out my body or is it the fibro?
they say people with fibro's pain is more heightened and that our pain is magnified more so than others that don't have it.

I'm really finding this out to be true. Because even the smallest of pains like in my fingers, or my back hip one day and not the next is related to the fibro. which means there's not a day that goes by where I don't have some sort of pain. My family dr. got to the point where she said she couldn't treat me and said I needed to see a psychiatirst. that was BEFORE they found out I have fibro and the osteoarthritis and the osteoporosis.
my spine and now my neck is in constant aches and pains. I can't even turn my head in the left or right postion with only the minimal amount it takes because it feels like my head is going to get stuck in a painful position permantly.
do any of you with fibro have this problem too?
My dr. didn't order a cervical xray. is that the proper term to use?
the upper neck area?

does celebrex help really?
I am taking ultram when I need it which is every day but it only helps to a point.
I am taking methadone and it only lasts till about 3pm and then it really hits me afterwards. what will it be like for me when I stop taking the methadone? which I have to stop taking soon because i"m going to be moving and it's hard to find a clinic that's close enough to give me the medicine everyday.
You have to go each day, 7 days a week to get medicated. I now have take home bottles, but not for the whole 7 weeks.

how am I going to handle this pain the rest of my life?
I feel like just giving in at times. I dont' ever feel refreshed during the waking hours and even after sleeping. I dont' really sleep solidly.

they also say that people with fibro, don't sleep very well. something about the stages of sleep and they don't reach the deep level of it that's needed in order for us to be at our best attention during the day.

I can go on and on and it still won't help me feel better. as I'm sitting here typing this, my shoulders, my spine, my neck hurts to the point where I want to just go and lay down.

I don't feel sorry for myself if anyone is thinking this, but my pain is real and it's not just excuse for me to justify my being and feeling miserable.

Im sure others who have fibro feel the same way too, right?
so I'm not unique.

thanks for letting me get this off my shoulders. maybe my shoulders will feel better if I do this. LOL
get it?

I mentioned earlier that I would wait until I talked to a doctor before taking Vit D supplements and I was at Walmart the other day and noticed they do not even sell Vit D by itself so I guess it is only prescribed by a doc because of the dangers of taking too much... yes, I was still thinking about doing it anyway...

I am taking a Vitamin D (D3) supplement. It's 400 IU; this is in addition to the 400 IU I take in my multi. The total is what my endocrinologist recommended for my osteoporosis. However, my latest labs a month ago showed a slight deficiency in my Vitamin D level; but that was after taking the extra 400 for only a month, so the test will be repeated in another month or so.

The latest "buzz" on D seems to be that eventually the recommended DV will be 800 IU for everyone.

I found the Vitamin D at an all-natural pharmacy. I'm sure you can find it at a health food store.

I hope you've fully recovered from your nasty bug. *hugs*

..... I"m forced to have to work 8 hours a day, but now it's as being an uncertified home health aide to my father in law. it's saving them money by us being here. alot of money. home health care here in NY is very expensive.

today I am feeling very depressed that I can't even do the exercises that my 80 yr old mother in law is able to do. Our bodies are reversed. I'm really 80 yrs old like she is, and she's in my body of a 48 yr old woman. she says it's all in the mind, which I USED to agree with that theory, but no longer do now that I am ill.

..... I HAVE to prepare the meals and clean up afterwards for his father and my husband. I HAVE to prepare the dinner and all the trimmings for the supper and when his mother gets home from work.

..... My therapist says I should not be here and that we should move out and have our own life and our own place.
maybe then I won't feel like I'm dying each day.
I really feel like that today. I feel like I have no future ahead of me.

..... each day I wake up there is a new place I have pain.
I dont' know what I'm doing wrong?
I just had to get this off my chest. I really hope things get better instead of worst.
sorry if I'm such a complainer and a downer, but these are the things that are needed to do so we can get it out and not get heart disease from holding it in. ( that's what the dr.s say anyway)

Maybe I need to change my choices of goodies and switch to pepperment patties to feel better?
I'll swap you a lollipop for one of your chocolates????? LOL

Oh, Linda, my heart just breaks for you. I'm sorry it's taken me so long to respond to your post.

You are doing too much. I don't think you need anyone to tell you that. It's understandable that you want to help you in-laws out, and save money on housing in the process, but is it really worth the price?

It sounds to me as if your MIL is having a good old time for herself--not having full-time care of her husband, being out of the house and working because she wants to be, coming home to a home-cooked meal every night. Not a bad gig if you can get it.:mad:

You, on the other hand, are preparing the meals, taking care of your FIL all day, and handling household matters. You're isolated; you feel put upon (because you are)--yet you feel guilty for feeling that way.

On top of everything else, you are exhausted and in pain most of the time.:(

It's a horrible situation for you to be in, and I think your health and mental well-being are going to take a nosedive if things don't change.

Is there any way that you and your husband can get a small apartment nearby his parents? Your MIL could cut back her hours at work. You could watch your husband's dad once or twice a week when she's not home. If any of your kids live nearby, they could help out, too.

It would be a different matter if your MIL were in poor health or frail herself. We do what we have to do/can do for our parents. But that's not the case here. She is working because she wants to; and not cooking and taking care of her husband because she doesn't want to.

I hope you will sit down with your husband and have a long, serious discussion with him about the situation. You're only 48 years old, and you feel helpless and hopeless about the future. Of course you do; in your shoes, who wouldn't?

Oh, and as much as I sympathize with you, I will NOT trade you any of my beloved Peppermint Patties for one of your measly lollipops!!:D

Edit: Lynn, I just read that you are moving soon; will you and your husband have your own place?

Lynn, I think it's worth giving Celebrex a shot for the arthritis pain. Have you ever tried Lyrica for your fibro? How about an anti-seizure drug like Neurontin to help you sleep at night, a chronic problem for those suffering from fibro?

I have trouble moving my head from side to side. I can move it to the point where my chin is over my collarbone. It hurts, but at least I have that much range of motion. With your history of arthritis, it could be that you have it in your neck now. X-rays of the cervical spine might be in order now.

Oh, I've been meaning to clarify that I do have fibro as well as myasthenia. My myasthenic symptoms were originally blamed on the fibro, hypothyroidism (which I also have), and/or Chronic Fatigue Syndrome (which I don't think I ever had, going by the usual criteria for the disorder) -- oh, and of course, psychiatric problems,:mad: before I had the tests that confirmed myasthenia.