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Old 03-17-2009, 02:25 PM   #1
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Angry How do you know when to blame the Fibromyalgia or if it's some other condition?

I have so many medical conditions it's not funny. When I start having a symptom how do I know if it's just the Fibro or if it's one of the other conditions or something new? For example, today I was in the kitchen fixing hotdogs for lunch, (which is rare in itself because I stay so tired and sickly I rarely cook anymore), but just hotdogs... simple right? Not for me. Before I got the chili heated up my legs had started to tremble. This happens anytime I have to stand for a few minutes. By the time I had the hot dogs together my left leg was numb down to the knee and my back was killing me. Is that just the Fibro? Here lately I've been getting so sleepy during the day that I have to lay down and nap. I mean sooo sleepy that I literally can't hold my eyes open. I have fallen asleep while sitting here at the computer. I have fallen asleep while sitting outside. I am afraid I'm becoming narcoleptic. I can't seem to think straight most of the time. There are times I forget words or forget what I was saying mid-sentence. Can I blame all this on the Fibro?

Also, for the past month or so I have been biting my tongue in my sleep. Last night was miserable. Everytime I started to go to sleep I would bite it. And I bite it so hard it bleeds. I am at my wits end with it. And my husband told me the other morning that I was talking in my sleep. I have NEVER done that. I see a neurologist next week because the tongue biting has gotten so bad. About 4 years ago an MRI showed three abnormal spots on my brain. They wanted to do a spinal tap to check for MS but I refused. I wish I had done it now. Anyway, I don't know if that has anything to do with the tongue biting, which from what I've read can be mini seizures.

I just don't know what symptoms and problems to attribute to the Fibro and which ones might be something more serious. Here is a list of my medical conditions just so ya'll can see what all I'm dealing with. These are all diagnoised and documented in my medical records.

In alphabetic order:

Acid Reflex (GERD), Allergies, Anxiety, Asthma, Degenerative Disk Disease (Disk Protrusion at L5/S1 pressing on two nerve roots and the thecal sac), Depression, Diabetes (Insulin Resistant), Diverticulosis, Eczema, Fibromyalgia, Hiatal Hernia, High Blood Pressure, High Cholesterol, IBS, Migraines, Mild OCD, Obesity, Osteoarthritis, PCOS, Rosacea, Restless Leg Syndrome, Scoliosis, Rheumatoid Arthritis, Sleep Apnea, Syndrome X (Metabolic Syndrome), Tachycardia.


See what I mean? Some of my symptoms could be caused from any number of these. Not to mention all the medications I am on. I take 11 different meds daily, in addition to some I have that are "as needed". I will be 38 in July. This is ridiculous! I read in another post where someone said they sometimes feel like an old woman in a young womans body. That's how I feel. I feel like I'm in my 70's. When I walk thru the house I have to hold on to the walls, what little bit I cook I have to hold onto the sink or stove or counter. If I have to stand any period of time at all I have to brace myself against something or hold onto something. I have to use a cane if we go shopping where they don't have the motorized riding shopping carts, and I have to stop and rest every couple of minutes or I feel like I would literally fall in the floor. I have a walker and a wheelchair too. I have had 5 bad falls in the past 3 years. Is this the Fibromyalgia or something else? I'm losing my mind ya'll. I stay so tired and weak and feel so "duh" all the time. And when one of the sleepy spells hits me there's no fighting it, I have to give in. And the tongue biting is really, really getting on my last nerve. All this in addition to my normal everyday stress, which I won't get into, but trust me, it would make a sane person go completely nuts.

But thanks for reading my rant. I just honestly don't know how much more I can take.

 
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Old 03-17-2009, 02:32 PM   #2
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

you probably do need to get the spinal tap---I swore after my first one I would not--it was fine, second one in 05 was abnormal so neuro says it could be MS down the road.

I have had the leg thingy you described before---could not stand long enough to fix something to eat That was the beginning of a major flare and right before I seen the 5th neuro and had the second LP

You do have alot going on---some of them I can relate.

how to know if it is Fibro or not---no clue sorry and even going to the Dr now I feel they think everything is Fibro and not looking for something else, We do have other health problems that need to be addressed.

Write things down to tell your neuro next week
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Old 03-17-2009, 07:05 PM   #3
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Hi there

I read your post and I just had to register and reply.

I don't have much advice... but I found this site because I'm suffering with the same problem and was looking for an answer. I have such a long list of ailments that sometimes I feel like I'm imagining them.

I too have lately had numbness in my leg and foot and awful lower back pain. But at the same time I have a whiplash type pain up the base of my skull, upper back and shoulder pain (the deep burning kind that you cannot ease)..I don't sleep. I can't sleep with the restless leg syndrome. I won't list off the other ailments that are not spine related but you get the idea.

I was told years ago I have degenerative disc disease. I have a tear in a lower disc and slight bulges in two neck discs. I have lost the natural curve of my neck so in xrays, the vertabrae are now straight thus trapping various nerves... and yet with all this... all i ever get is consultants looking at my scans and saying 'yep, it's not severe enough for surgery, we get people with scans much worse than this' , and then I am sent on my way. I should also mention that twice I have been told by a rheumatologist that I am hypermobile, meaning I am a lot more flexible than I should be. So therefore anytime I'm in agony and I go to a physio or doctor, when they see that I can move and bend, regardless of me explaining, they just say 'no if it were serious you wouldn't be able to bend'.

They offer me anti inflammatories which make me sick, anti depressants which gave me the feeling of a heart attack.. steroid shots which gave me every side effect i can think of, all they want to do is give me pills that my body cannot handle. I take paracetamol and codeine everyday. Sometimes ibuprofen has to come into the mix.

I'm miserable and fed up and feel like nobody understands and that they're just sick of me. I'm out of work and know that no matter how long I take off and improve.. the second I try to go back to work, within literally ten minutes of desk work I am suffocating with pain. I feel like my life is a waste of space sometimes. I don't mean in a suicidal way.. just like.. I just want to stay in bed or watch tv or hang with my pets. I really try not to complain and to stay cheerful, but I find on the days I'm miserable and angry, my loved ones just don't have time for me.

I'm tired of being judged... I'm tired of wondering if it is fibromyalgia (which many people here don't even believe in) or wondering is there something more serious wrong. I mean there is only so many times you can ask a doctor to send you for further investigations and have the consultants shrug.

I'm sorry that this was more of a rant than advice.. but I'm hoping that you will find some comfort in the knowledge that i know exactly how you are feeling right now and you have my full sympathy.

 
Old 03-18-2009, 06:07 AM   #4
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Post Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Your list looks a LOT like mine....I don't have the heart problems, or the diabetes (borderline), or RA, but have suffered with all you have named and then some.

I was later found to have MITOCHRONDRIA MYOPATHY, (a myopathy of muscular dystrophy) and Fibro. Older now, I have lots of osteo, a fall that has messed up my back, hip, groin, SI Joint up forever, lupus, and horrible horrible allergies.

DO YOU HAVE ALLERGIES? This time of the year I have allergies soooooo badly I keep thinking I have a brain tumor, the palsy, a virus, and my legs do buckle. I get extremely nervous/shaky and dizzy and lots of other symptoms.

ALLERGY can kick Fibro in the bee-hind is what I'm saying. Lots of tinglings (in face etc) that I do not have other times of the year. I can barely sit and write this right now I'm so shaky, nauseous, dizzy and have had diareahh all morning. I feel like my body is about to GO OUT OF CONTROL it's soooo bad and weird feeling.

I don't know if this might be any of your problems, but allergies can cause a LOT of symptoms you'll never find associated with it on the net or a doc.

Just a thought...........

In all these years of reading and talking to people with Fibro.....NONE have ever been diagnosed with MS, who thought they had Fibro. I'm sure there are some, but I've never once heard of one after the SPINAL TAP (I've had 2) but PEACE of MIND is worth a LOT.

BLESSINGS TO YOU, SHUG60

 
Old 03-18-2009, 07:38 AM   #5
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

I'm so sorry ya'll are going thru the same type of things I am, but it does help to know I'm not completely alone. I am so tired of going to doctor after doctor and not getting anything accomplished. I don't want them to throw pills at me, I want to know what's wrong. I've been to every "ologist" out there except a proctologist and a urologist. I feel like there is something very wrong somewhere but they aren't finding it.

I forgot to mention the herniated disk in my neck, which I believe was a result of a car accident a couple of years ago when I was rear-ended while minding my own business. Sometimes I get these rippling spasms that start at my lower back and "ripple" all the way up to the back of my head. I told my pain managment doctor about it and he just said it was the Fibromyalgia. Does that happen to either of ya'll? It's very painful. It doesn't happen daily thankfully.

Yes, I have a lot of allergies. I've been on allergy shots for almost a year now. They do seem to help quite a bit. I take them once a week right now and see my allergist next month and am hoping to go to once a month.

I thank you for your replies. Puss In Boots, I appreciate that you registered to make that post. I hope to hear more from you and I hope ya'll are having a "good" day today. Thanks again

Last edited by jann71; 03-18-2009 at 07:42 AM.

 
Old 03-18-2009, 03:08 PM   #6
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Quote:
Originally Posted by jann71 View Post
I have so many medical conditions it's not funny. When I start having a symptom how do I know if it's just the Fibro or if it's one of the other conditions or something new? For example, today I was in the kitchen fixing hotdogs for lunch, (which is rare in itself because I stay so tired and sickly I rarely cook anymore), but just hotdogs... simple right? Not for me. Before I got the chili heated up my legs had started to tremble. This happens anytime I have to stand for a few minutes. By the time I had the hot dogs together my left leg was numb down to the knee and my back was killing me. Is that just the Fibro? Here lately I've been getting so sleepy during the day that I have to lay down and nap. I mean sooo sleepy that I literally can't hold my eyes open. I have fallen asleep while sitting here at the computer. I have fallen asleep while sitting outside. I am afraid I'm becoming narcoleptic. I can't seem to think straight most of the time. There are times I forget words or forget what I was saying mid-sentence. Can I blame all this on the Fibro?

Hi, JUst wanted to say I feelso much for you right now and I'm so sorry you're suffering this bad.I'm glad you talked here. I'm the girl who said about the old woman in a young womwns body and thats how I feel most days.I have almost all of your symptons except for the tounge biting so I can only imaging what an extra sympton would do to me. I would insist on whatever tests you feel are necessary. even though I keeo saying I'm going to do so myyself I never quite get round to saying things when I'm with the doc. Please just come on here and have a rant whenever you feel the nee. I only found the site the other week and its saving my ***. I won't even say what I tried to do to myself before I found it. Don't think its allowed but you can get the drift. Please don't allow that to happen to you.I don't know what else to say other than there can be good days welll for me anyway and I truly hope for you too.
Take care of yourself
Sinead

Also, for the past month or so I have been biting my tongue in my sleep. Last night was miserable. Everytime I started to go to sleep I would bite it. And I bite it so hard it bleeds. I am at my wits end with it. And my husband told me the other morning that I was talking in my sleep. I have NEVER done that. I see a neurologist next week because the tongue biting has gotten so bad. About 4 years ago an MRI showed three abnormal spots on my brain. They wanted to do a spinal tap to check for MS but I refused. I wish I had done it now. Anyway, I don't know if that has anything to do with the tongue biting, which from what I've read can be mini seizures.

I just don't know what symptoms and problems to attribute to the Fibro and which ones might be something more serious. Here is a list of my medical conditions just so ya'll can see what all I'm dealing with. These are all diagnoised and documented in my medical records.

In alphabetic order:

Acid Reflex (GERD), Allergies, Anxiety, Asthma, Degenerative Disk Disease (Disk Protrusion at L5/S1 pressing on two nerve roots and the thecal sac), Depression, Diabetes (Insulin Resistant), Diverticulosis, Eczema, Fibromyalgia, Hiatal Hernia, High Blood Pressure, High Cholesterol, IBS, Migraines, Mild OCD, Obesity, Osteoarthritis, PCOS, Rosacea, Restless Leg Syndrome, Scoliosis, Rheumatoid Arthritis, Sleep Apnea, Syndrome X (Metabolic Syndrome), Tachycardia.


See what I mean? Some of my symptoms could be caused from any number of these. Not to mention all the medications I am on. I take 11 different meds daily, in addition to some I have that are "as needed". I will be 38 in July. This is ridiculous! I read in another post where someone said they sometimes feel like an old woman in a young womans body. That's how I feel. I feel like I'm in my 70's. When I walk thru the house I have to hold on to the walls, what little bit I cook I have to hold onto the sink or stove or counter. If I have to stand any period of time at all I have to brace myself against something or hold onto something. I have to use a cane if we go shopping where they don't have the motorized riding shopping carts, and I have to stop and rest every couple of minutes or I feel like I would literally fall in the floor. I have a walker and a wheelchair too. I have had 5 bad falls in the past 3 years. Is this the Fibromyalgia or something else? I'm losing my mind ya'll. I stay so tired and weak and feel so "duh" all the time. And when one of the sleepy spells hits me there's no fighting it, I have to give in. And the tongue biting is really, really getting on my last nerve. All this in addition to my normal everyday stress, which I won't get into, but trust me, it would make a sane person go completely nuts.

But thanks for reading my rant. I just honestly don't know how much more I can take.

 
Old 03-18-2009, 08:11 PM   #7
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Hi Jann, Just so you don't feel lonely I will tell you my list: Fibro, Osteoarthritis in knees & hands, Tendonitis in left elbow, IT Band tendonitis in rt. leg, DDD in back, 2 herniated discs in neck, bulging disc in low back, heel spurs, bunions, allergies, high blood pressure, high cholesterol, very overweight, hypothyroid, acid reflux, anxiety, dry skin and keratosis pilaris, TMJ which comes and goes.

Just to warn you--if you get something new, try to get it looked at. I Ignored rib and stomach pain for a long time because I thought it was just the fibro and I never got any answers from the rheumy. Finally I went to a gastro doctor a few weeks ago and had an endoscopy and found out my stomach is filled with ulcers (he thinks because of all the drugs like Advil and aspirin and the anxiety.) Hopefully, they will heal. I had to go off the advil and my daily aspirin for my heart.

Trust your instincts and keep trying to find out if you don't feel like it's *just fibro.*

 
Old 03-18-2009, 09:28 PM   #8
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Hi, Jann71. Just wanted to commiserate a little... I feel much like you do. My list is very similar to yours, particularly with the fibro fog and falling. I seem to go through periods where I have an unusually high number of accidental falls. Then I'll be okay for a while and, with no warning, I start falling again. I don't know why... I wasn't particularly clumsy before the fibro, so maybe it is related...

I too experience the frustration, particularly with docs. Right now, I'm primarily pursuing hypothyroid issues (Hashimoto's disease) because, frankly, I'm at my wit's end on trying to deal with the fibro and I'm fed up with feeling helpless over the fibro. At least I feel/think I can maybe do something concrete about the hypothyroid. And I figure that if I do have undertreated hypothyroid issues, getting them "corrected" might make my fibro symptom list shorter... I just don't know... I get aggravated by docs who "give up" on me (and angry and hurt) or who just want to throw a pill at me... I hope things are better for you and wish you the best!
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Old 03-19-2009, 09:42 AM   #9
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Hi Jann--I just had to add that you gave me my laugh for the day when you wrote that you've been to every OLOGIST out there! I have been also--the rheumatologist, endocrinologist, neurologist, dermatologist, gastroenterologist, cardiologist etc. etc.

 
Old 04-26-2009, 05:01 AM   #10
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Good luck to you with this. For one thing, the symptoms for fibromyalgia can be the same as for other conditions. My experience is that once you get labeled with fibromyalgia, the doctors all take this for granted. Anything and everything you have symptoms for are automatically labeled as fibromyalgia. One of my doctors told me "You have a brain and know a lot about fibromyalgia. Don't let doctors take advantage of you." Easier said than done. It takes more tests and expenses to prove that something is other than fibromyalgia; even then tests aren't always definitive.
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Old 04-26-2009, 11:34 AM   #11
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

I found a website a few years ago which is commonly shared between fibro sufferers. Someone has found 63 symptoms associated with fibromyalgia. If you search on "63 symptoms of fibromyalgia" I think you'll be taken to the right site.

However, don't assume if you have one of them that it's another symptom of your fibromyalgia. Check with your doctor or rheumatologist periodically to make sure you haven't developed something new.

Last edited by Aberlaine9; 04-30-2009 at 04:50 AM.

 
Old 04-26-2009, 12:02 PM   #12
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

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Last edited by applecollector; 04-26-2009 at 12:04 PM.

 
Old 04-26-2009, 04:14 PM   #13
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

Concerning your tongue biting episodes, I have experienced this same thing as well as biting my lips. It is so annoying! What helped me is a bite plate that the dentist prescribes for teeth grinding. I had the teeth grinding thing so badly that my teeth were on the verge of falling out. So I got the bite plate and it resolved two situations that were going on.

Kirstee

 
Old 04-30-2009, 04:48 AM   #14
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Re: How do you know when to blame the Fibromyalgia or if it's some other condition?

For the past few months, I've been complaining of loose joints - in my hips, knees and shoulders. I saw my rheumy yesterday and told her about my concern. She perked up when I mentioned my shoulder. She started poking around and found that I had injured my rotator cuff. So, it's off to physical therapy for me. Hopefully, when it's over, I'll have one less pain.

Moral: don't be afraid to tell your doctor what's hurting. If necessary write a list to bring with you. We shouldn't assume everything's due to our FM. But we don't want to be seen as hypochondriacs either. Bottom line, if you're suffering from something new, see your doctor about it.

Gentle hugs,
Nancy

 
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