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Old 05-23-2008, 09:21 AM   #1
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I've just been diagnosed with fibromyalgia.

What now? My rheumatologist diagnosed me today with FMS and is also doing blood tests to rule out thyroid disease and Lupus (which she doesn't really think I have, but have symptoms of both). She is going to have to blood test results sent to my primary care doc (he referred me to her) along with her diagnosis of FMS and I am to follow up with him for treatment. So that brings me to my next question. What are treatments for FMS?

 
Old 05-23-2008, 10:34 AM   #2
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Re: I've just been diagnosed with fibromyalgia.

Just yesterday, my Dr suggested I may have Fibromyalgia as well. I asked what they did to treat it, and he said tramadol and tylenol for pain and strengthening exercises. I'm sure there are others on here who will know more, just thought I'd share what I've heard in a similar situation. Good luck!

 
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Old 05-24-2008, 06:22 AM   #3
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Re: I've just been diagnosed with fibromyalgia.

Miss Jay,
I feel this a very imporant thing that eveyone should know if they are suffering w/fibromyaligia and any other type of joint pains through out the body.

I too was diagnosed with fibro when my family dr. couldn't do anything for my constant aching and pain. even the simplest of tasks that I normally don't do, would cause so much pain in my muscles the next two days after wards.

my fibro dr. did the fibro exam and told me I have it. he prescribed medicine for it, and told me to come back for a follow up.
I did, and I wasn't doing any better. as a matter of fact, nothing had improved and I was miserable.
it got to the point where I missed so many days of work because I was simply too tired to MOVE to get ready for work. I started moving slower and slower and needed to take naps daily. that's anothe symptoms of fibro.
you need more rest than others who dont' have it.
you tire more easily too.
it effects our minds as well. our memories. something like "brain fog" they call it. or something similar.

now, getting on to why I came her to tell you something.
my rhuemy dr saw I wasn't doing anybetter and just as I got up from the exam table and got ready to go out the door, he said, "wait", " did anyone ever check your vitamin D level?
my answer was "no".
he sent me over to the hospital lab next door, I gave a sample of my blood and when I went back for another follow up to get the results, mine was so horribly low.
It was so low for so long that I wound up having osteoarthritis in my fingers, the joint in my toes, my spine where I couldn't even turn over in bed at night, and I weighed only 115 lbs. I also was dx'd with having osteoporosis. all these things were happening at once.

you can die from having a very low level of D.
I went into the sun and even got tanned, so how could it be that I wasn't getting sufficient sun. I live in NY, not the north pole.

he told me to take a supplement of D and low and behold, all my joint pains and neck pain got better in a quick amount of time.
I felt better, looked better, etc.

I think a low level of D is closely related with having fibromyalgia and not enough doctors or patients aren't aware of this.
I just had another new rheumy dr I had to switch to because of insurance reasons, tell me that it's not taught in med. school that much.
something to that effect she told me.

my memory is gradually getting worst and worst. so please don't quote me exactly word for word.

Do a search on it and you'll see very similar symptoms of it.

I hope you feel better.

Linda

 
Old 05-24-2008, 08:05 PM   #4
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Re: I've just been diagnosed with fibromyalgia.

That condition does have a name. It's called Hungry Bone Syndrome. It's generally something associated with end-stage renal disease, so nephrologists are the doctors that tend to see it the most.

 
Old 05-25-2008, 07:10 AM   #5
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Re: I've just been diagnosed with fibromyalgia.

Grapedy,
what did you mean when you said:"That condition does have a name"
were you talking about the vitamin D deficiency?

I wasn't aware of that medical syndrome and that it's end stage renal disease.

I"m going to do a search on this syndrome.

thank you so much for your information on this.
it may help many many people who are suffering with this illness and internists might not catch it but a nephrologist will. I never knew there was a difference between a nephrologist vs. a urologist.

Linda

 
Old 05-25-2008, 01:11 PM   #6
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Re: I've just been diagnosed with fibromyalgia.

Thank you so much for the information. My rheumy did take blood and is going to test for vit D deficincy since I have not been tested for that yet. I should have the results in 2 weeks or so.

I have a question maybe you guys could help me. Yesterday I took a pair of hedge trimmers and went a little crazy in my yard. I went at the trimming for about 20 mins. My arms were aching so I stopped and went inside to wash my hands. Then it was like my muscles were contracting horribly and my sense of touch was all weird. Like my hands were cramping up and all twisted. Also, and the SCARIEST part of all of it were the HORRIBLE tremors in my arms and hands that lasted severly for about an hour but are still happening today with certain postures/lifting a gallon of milk, holding my phone when my arm is bent.

Is tremor a symptom of fibromyalgia? I don't know much about this syndrome. My rheumy told me about some free workshops at UofM that I am planning on attending to find out more but until then I remain concrened about these strange tremors. I should tell you that i've had it/noticed it for about a year or so now but NEVER to the degree of yesterday. My arms are so sore today, by the way, they burn like h*ll.

Any advice would be greatly appreciated. Thank you so much.

 
Old 05-26-2008, 08:46 AM   #7
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Re: I've just been diagnosed with fibromyalgia.

MissJay,
The same thing happens to all of us, especially if we're not used to using our muscles enough. As the saying goes " If you don't use it, you lose it".

the medical reason is, if you're not cooling down from clipping gradually, and if you stop the exercise abruptly, your circulation will be challenged and lack of oxygen to the muscles will cause them to spasm. So the lack of oxygen is causing the shaking for a long time afterward.

I found this to be MORE so if we have fibromyalgia.
I began noticing it a couple years ago when I would do yard work, or plant bulbs, or clippping with the hand clippers. I would be able to do with out dying in pain days afterwards.
I used to be in so much pain that I could barely sit down because you have to use your muscles to do that. we never notice this before the fibro but feel it horribly when you fibro.
people and family do NOT understand this.
i knew something was wrong because even the most minimul jobs would set off pain in me for two to three days afterwards.
eventually I had to stop things which really effected my life and eventually caused my body and it's muscles to weaken.

The other day I was cutting my 84 yr old father in law's nails. I did the work of what a podiatrist would do which took me a very long time because I wanted to give him the whole works.
to get to the point, I had to hold my body in a twisted position and plus the fact I wasn't using a bench or stool to sit on caused a debilating pain that ran down the muscles in my left leg all the way to the buttock area.
I even felt like I had a low grade fever the next day when the pain set in . for two days I suffered. I could barely sit down in a chair to eat.
this is how bad my fibro is getting.
so the fibro is effecting my life to the point where I really have to think before I do things.
at least I have a diagnosis now rather than trying to find a reason why I hurt so much after tasks I normally don't do.
it's the muscles we normally don't use.
do you often clip the hedges? If you did use those muscles on a daily basis, your arms would not have shook afterwards.

don't worry, it's common.

I hope i was able to help you.

sincerely,
Linda

 
Old 05-26-2008, 01:50 PM   #8
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Re: I've just been diagnosed with fibromyalgia.

Linda, thank you so much for your information. It helps more than you know. I was so worried and scared. I knew it all had to do with the trimming of the hedges but I had never experienced anything like that before. I get tremors sometimes, but NEVER like that. To answer your question, no, i hadn't used my arms that way in a long time, so I'm sure that did not help the situation. This fibro stuff hurts. I'm still excessively sore and this was on Saturday. I feel like someone had been continually punching all up and down my arms for about 24 hours and then pain you would feel after that is how I feel. Of course everybody here knows how I feel. I guess I'm just trying to explain the pain because nobody at home knows how I feel. My family had thought, and I did too, that I have been a hypochondriac for soooo long, and now that I have a diagnosis they don't believe me. I almost dont even believe it, but deep down inside I do. I guess Im just confused and scared about this whole situation. Ugh...thanks for letting me vent.

 
Old 05-26-2008, 03:07 PM   #9
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Re: I've just been diagnosed with fibromyalgia.

it takes most of us fm sufferers a long time to realize what we are and are not capable of doing...mentally and physically with our bodies. even after all these yrs...i still feel useless when i cannot do something..but i have learned not to do it all and be in terrible pain..like forever! now if i know i will suffer during or after....i don't do it period.
i have also realized that if it does'nt get done...just how big a deal is it!?
i'm so sorry you are hurting from yard work..i've been there and can feel your pain.
if you have any pain med and/or muscle relaxer, now would be the time for you to totally relax..hot baths...heat etc. and take care of you.
please let us know how you're doing.....take care...bevann

 
Old 05-26-2008, 04:09 PM   #10
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Re: I've just been diagnosed with fibromyalgia.

Thanks bevann, you're kind words mean so much at such an unsure time in my life. I don't really have any pain meds besides motrin, so I think I'll take 800mg and a hot bath.

 
Old 05-26-2008, 04:58 PM   #11
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Re: I've just been diagnosed with fibromyalgia.

A nephrologist deals with kidneys ONLY. A urologist deals mainly with the bladder, but also handles kidney stones. If you're on dialysis, you see a nephrologist. If you need lithotripsy for a kidney stone, you go to a urologist. It's kind of confusing, lol.

I'm not sure what the exact criteria is for when vitamin D deficiency turns into hungry bone, but it has to be a pretty severe deficiency and usually has hypocalcemia involved as well. Blood calcium levels are regulated by the kidneys, so that's why nephrologists see real hungry bone syndrome more than anyone else.

 
Old 05-26-2008, 05:09 PM   #12
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Re: I've just been diagnosed with fibromyalgia.

Well I have was diagnosed almost 3 years ago but have suffered since I was a pre-teen. I was on Mobic and Tylenol 3 for a long time. They stopped working now my dr. has me on Fentynal 75mcg( which is a heavy duty opiate), Tylenol 3 and Mobic. But I still have no relief from the pain. I have had a flare up for the past 28 months and my dr told me Monday that I may never get out of this flare up for the rest of my life that pretty much I have to deal with it. I see a psychologist 3 times a week for sever depression. I am also on heavy sleep aids due to insomnia from pain. My dr. wants to send me for an MRI to see what is going on and why my case is so bad. GL I hope all goes well for you and don't worry there may be many ppl out there that don't understand but There are so many of use who understand and know what you are going through

 
Old 05-28-2008, 06:48 AM   #13
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Re: I've just been diagnosed with fibromyalgia.

thanks grapedy for explaining this to me.

I had a stone, a very tiny one that I passed at the ER. I was told I had right sided hydronephrosis and right hydrouter and that I should be seen the next day by a urologist.
should they have referred me to a nephrologist instead?

I've never been followed up to have a specific test to see what was going on.
my health has not declined in anyway since then and I did notice that I didn't have certain uncomfortable symptoms anymore. subtle changes through out the day.
it must have been months there was warning signs but I didn't know the signs of kidney trouble then.

I also wanted to say to say to missjay, that I TOO! felt like my family and co-workers were beginning to think I was turning into a hypochondriac.
That made me even feel worst about myself and i started becoming very depressed from it.

The medicines they prescibed to me didn't help me either.
I'be been on mobic, and ultram and something else but they did no good. so I just stay away from doing certain tasks that I KNOW will effect me.
I now get rest when my body and mind are exhausted. I do forget sometimes what can cause the pain and I wind up kicking myself for not even thinking it could hurt me.
just squating in a certain position for a length of time will cause a flair and make you feel like a giant has punched your legs and muscles for hours.


there's a difference in being a hypochondriac and a difference in feeling like we're sick all the time. a hypochondriac is afraid of illness and afraid they're going to die. we DO feel sick and it is legitamate. especially since our body is telling us thru pain that something is wrong.
that's not a figment of our imagination. it's real.

Lilbear,
I am beginning to think there is nothing that will take away the pain of fibro. it's a fairly new illness and they still don't know why people get it.
they are right now studying it as I write this. they say ceratain medicines work but there are dangerous side effects to them.
the best we can do is to try to stay away from the opiates since they're not working for you anyway and speak to your doctor when you decide to come off them. there are horrible withdrawal symptoms and can't be stopped at once. you have to go down on it gradually till your down to almost being done.
then it will effect your body when you're off the medicine. people have complained about not being able to sleep on their own for months. they said they feel very weak and found it hard to do even normal tasks becasue they were so weak. they got diahrea and ached in their bones.
I'm not saying this to scare you, but I'm trying to warn you about the strengths of opiates and if they're not really working, it would be best to stop them. that's my opinion. I just don't want you to suffer. soem dr's don't mention this to the patient when prescribed. you have to find out the hard way then.

beveann,
I too agree with you that if soemthing needs to be done, don't worry about it.
what's the big deal anyway? it took me years to be able to just let go and don't worry about the small things. that comes with age I believe.
what seemed so important to me before, doesn't bother me anymore.

you all have made me feel so much better about myself. I thank you all for speaking up and sharing what you're all going thru too.
this info will help many others if they ever come to this board.


Linda

 
Old 05-28-2008, 08:15 AM   #14
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Smile Re: I've just been diagnosed with fibromyalgia.

Dear ,

I'm an Asian fibro patient that I got fibro about ten years ago, when I was 19. I was diagnosed when I was a healthcare student. Very few Asian got fibro, and lesser ppl who got fibro at this age also. I've been working for patient education. I worked for cardiac patient but of course dealing with fibro is different from dealing with heart disease.

What I want to say is, despite any healthcare studies I got, the ultimate factor helping us to live with this pain syndrome is to treat it as our friend. Sounds not easy, but the syndrome always tells us something. Are we too aggresive in doing something that day? Are we suppressing some feeling that we need to deal with, take care with, or voice out? This syndrome tells us a lot of things in our heart. Don't drill in sciences too much if Fibro is psychological problem or not, all illnesses in fact connect with our mind and spirit. Our body closely connects with the mind and spirit.

Medicine is important, daily life coping skills are important, trying out the most appropriate exercise (yoga, tai chi, hydrotherapy, etc) for yourself is important, trying out the most appropriate schedules in resting, sleeping, doing work & housework, exercise, meditation, praying, etc. are importnat, trying out Chinese Medicine methods including accupuncture would help ...

but the most important is to listen to our body. When pain comes on me during walking, I tell myself "the friend Fibro is walking with me". This is a method in accepting Fibro. When we have the ability to accept the pain syndrome, things will be managed much better.

From my work and personal experience, mutual sopport is also very important. Do keep habit in coming to the forum, or meet friends who got pain syndrome. We had an motto in patient education,"Medicine takes up 1/3 portion in managing illness, while self-management takes up 2/3 portion in managing illness". Self-mangement includes manging our body, mind and spirit, manner towards illness and life, and our involvement in mutual support.

I can't say I'm managing myself in a very perfect way, but many times better than before.

Last but not least, remember to appreciate at those days you feel better. Appreciation give us power in dealing with illnesses. Appreciate to God if you have religious belief. Don't forgot to appreciate yourself everyday. Find something to appreciate yourself everyday, e.g. I've done something despite the pain. May feel odd at the beginning, but it is a very important manner in facing illness and life. Don't forget it.

There're a motto in Chinese traditional stories, talking about playing swords,"the most important is not the method in playing swords, the most important is method of the heart", that is, mind and manner. These things are always being neglected. Medicine is important, those I mentioned are much important.

Ppl here will walk with you. U'll not alone.


Jane (HK)
p.s. I got pain today, so i have to be on schedule to take rest and sleep. Have to sign off here.

Last edited by janerosalie; 05-28-2008 at 08:29 AM.

 
Old 05-28-2008, 11:40 AM   #15
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Re: I've just been diagnosed with fibromyalgia.

What a positive way to look at this illness. Ill try to remember that. I am in need of sleep for my body's sake but seem to be wide awake. I did the dishes and fixed some food. That may be my accomplishment for the day but at least it was somthing. I have the blind open so thats a good thing for some light. Its a dreary rainy day here and Im hot w/o air conditioning and cold and achy with it on. Im going to try and rest too. I havent posted alot but have read alot and learned I am not alone.
Shannon

 
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