Want to talk to others with fibromyalgia: What symptoms do you have?

Posted by ChelleR @cheller, Apr 23, 2012

hello everyone i'm new at this but was wanting to talk to other people about fibromyalgia and the symptoms that other people have

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@jodi

I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi

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My. Wife has the similar pain for about 5 in the upper back of her neck.goes into her head. ...and sometimes travels to her eye...back of her neck is almost always swollen ..the only thing that has helped has been motrin ..and now that's not as effective .it has been getting worse. The diagnosis. Is a stinosus in her upper back and neck.. still looking for answers besides over medicating

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@jodi

I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi

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hi Jodi, i hope you doing good. I haven't been diagnosed with fibro but over the years i have been in constant pain and all what the doctors ever do for me is pain management, they even went as far as putting me on steroids none since to have helped and am just so tired. Am in Ghana and it looks like no one seems to understand me when i complain.

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@jodi

I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi

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Hello Ethel , that was the same for me up till now two years later, they say its too knew and they don't have a lot of studies for it. It also says a lot of doctors don't believe in it. Anit thats crazy!!!
If I was you I would ask your doctor do he know about it and do he think thats what it can be?

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@jodi

I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi

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hi Eliz, thanks for you thoughts i guess ill just have to continue searching for answers.

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Ladys

Try gabapentin. 100mg. 4 times
pain meds
Yoga every morn. 30 mins
read. Www. Beat and treat.com
IAM. 75% better
10 years for me
Living with bipolar husband------stress. Not your cup of tea

Best of luck
Smoken

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@anon95031863

Honestly, every time I get a pain I have to wonder if it'll stick with me, or just pass for good. I have fibro, chronic intercostal neuralgia, & chronic fatigue. I try to focus on just one day at a time.

Did you recently get diagnosed?

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I've had fibromyalgia for almost 35 years now. My doctor prescribed Flexeril, a muscle relaxant, to help me sleep and relax. It really works for me. (It also helps my lower back pain from degenerative disk disease, so it packs a double punch.) I take it every night before bed.

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Dear Fibro community, I am new to being unwell. I didn't know where to start, and still don't have a diagnosis. I have had burning skin level pain, stopped sweating appropriately, then the muscular stuff-i began twitching and spasms, then it became pain (like my muscles feel and weakness), and I have joint issues, and there seems to be atrophy. I am most concerned about my facial/cranial weakness. I cannot flex/clench my jaw. And my tongue is shorter when I try to stick it out (I know this because I have dumb pics with my toddlers sticking my tongue out down my chin, and now it is barely sticking out past my lips). I can't get a doctor to tell me whether this could be benign (as in fibro, or CFS, or FND). They simply say they don't see clinical signs of weakness. So I figured I would come to the community to ask. Obviously I am concerned for worse things (like ALS, Muscular Dystrophy), but would be infinitely happy not to have these things. Thank you.

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@flor2022

Dear Fibro community, I am new to being unwell. I didn't know where to start, and still don't have a diagnosis. I have had burning skin level pain, stopped sweating appropriately, then the muscular stuff-i began twitching and spasms, then it became pain (like my muscles feel and weakness), and I have joint issues, and there seems to be atrophy. I am most concerned about my facial/cranial weakness. I cannot flex/clench my jaw. And my tongue is shorter when I try to stick it out (I know this because I have dumb pics with my toddlers sticking my tongue out down my chin, and now it is barely sticking out past my lips). I can't get a doctor to tell me whether this could be benign (as in fibro, or CFS, or FND). They simply say they don't see clinical signs of weakness. So I figured I would come to the community to ask. Obviously I am concerned for worse things (like ALS, Muscular Dystrophy), but would be infinitely happy not to have these things. Thank you.

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@flor2022 Hey there. I'm sorry to hear about your undefined symptom causes, and completely understand how scary, confusing and frustrating it is to not have a clear diagnoses. May I ask how long you have been experiencing the bulk of your symptoms and feeling unwell? Do you mind sharing what types of specialists you have worked with so far, and what diagnostic tests have been done?

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So sorry you're having such distressing health issues. I can't be of any help to you as I just have the fibromyalgia syndrome that many doctors won't acknowledge. But my digital hugs are sincere and meant to keep lines of communication open. It was a young rheumatologist with a hematology understanding that got me heading in the right direction. Close to a year since then, I carry the weight of non alcoholic cirrhosis of the liver. As it is end stage for my 72 year old liver, I do what I can. Hence my hugs...

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@flor2022

Dear Fibro community, I am new to being unwell. I didn't know where to start, and still don't have a diagnosis. I have had burning skin level pain, stopped sweating appropriately, then the muscular stuff-i began twitching and spasms, then it became pain (like my muscles feel and weakness), and I have joint issues, and there seems to be atrophy. I am most concerned about my facial/cranial weakness. I cannot flex/clench my jaw. And my tongue is shorter when I try to stick it out (I know this because I have dumb pics with my toddlers sticking my tongue out down my chin, and now it is barely sticking out past my lips). I can't get a doctor to tell me whether this could be benign (as in fibro, or CFS, or FND). They simply say they don't see clinical signs of weakness. So I figured I would come to the community to ask. Obviously I am concerned for worse things (like ALS, Muscular Dystrophy), but would be infinitely happy not to have these things. Thank you.

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So sorry for what you’re going through. Have you had extensive lab work done? Blood and urine screen, etc? I also understand going to doctors for help only to be frustrated. Rheumatologist’s usually diagnose Fibromyalgia, but other doctors can too. You describe several symptoms that can be independent of one another. What kind of doctors have you seen?
I was diagnosed with fibromyalgia 20 years ago. It certainly has an array of symptoms that come with it! One thing I’ve learned over the years is to be careful of chalking up symptoms to my fibromyalgia diagnosis.
Rachel might have good suggestions for you. As frustrating as it can be, finding the right doctor to help you diagnose or eliminate concerns would be a good place to start. Does your primary doctor know about your symptoms? Have they referred you to any specialists?

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