Do I really have Fibro? Please read and respond.

Hi Everone,     First let me say I am so happy this board has been started! Next I need your help! Here is my story. Several years ago when Fibro was still not accepted by many Doctors I was diagnosed with Fibro, It was just after the big chronic fatigue blast and I just felt like the Doctors were finding yet another category to put people in that they couldn't diagnose. So I never really bought into it, and figured if I did have it they couldn't help me and I had to just live with it anyway. Since then, There is not a day that goes by that I don't have some strange pain. I have very weird muscle spasms, like I went through a phase where my whole torso would go into a spasm and I could hardly move. Not a good thing when you are driving.  I get spasms in my arms, legs, feet, and back as well. My joints hurt all the time especially my hips and arm sockets just ache. Unexplained pain or hurting without injuries. The cold seems to make me hurt worse and yet this last summer I seemed worse then I was the summer before. I can only lay in bed for about 4 hours without having to get up and move around because I hurt. Most of the time if I sit for even 10 minutes and try to get up I am so stiff and hurting that I have a hard time even looking normal trying to move. I feel like I am 80 years old, Not 50. This hurt is like a frozen joint but the muscles around it hurt as well. It is like my muscles just tighten all the way up. or I lose the elasticity in them.  every time I don't move them for 5 minutes.  I am finding I have to take more and more vicodin especially to get moving in the morning.  Before my RNY Nov 13, 2006 I was on an anti inflammatory that  helped but I had to quit taking it (NSAIDS NOT ALLOWED). I almost didn't have the surgery because of the fear of not being able to have the anti inflammatory. Let me say here, I AM SO GLAD I DID HAVE THE SURGERY!) I am 1 year out and have lost 120 pounds. Maybe 10-15 pounds to go. I am taking more vicodin then before but still way under the maximum dose. (2 vicodin, once maybe twice a day. With the cold my shoulders are starting to ache again. I am not sure if the weight loss has helped my pain, I do seem to feel better if I take the vicodin and force myself to exercise. Water aerobics helps too but my work schedule keeps me from being able to routinely participate. Please, If you have Fibro, Does this sound like a typical patient? Are the Doctors just blowing me off or thinking it's all in my head? I have accepted there is no other explanation for my pain at this point. But should I at least ask to see a Rheumatoid Dr? Thank You, for taking the time to read this. I am really hoping it will help other as well as give me some of the answers I so desperately need.                                                                                            Nancy

Hi KP -

I know I am not qualified to say if you have fibro or not but don't give up on the doctors and keep asking questions.  I kept a journal/diary of body symptoms/complaints and when I presented the items all together, my doctor diagnosed the fibro.  Individually, I could have spent years researching each problem.  Collectively, it helped my doctor recognize it for what is was.  I know what you mean about standing after sitting.  I can't stand straight after being in one position for a while.  Couches and office chairs are the pits. Lyrica is new for me though and has really improved my quality of life.  Much more mobility and flexibility.  I have fewer episodes of frozen back/joints. Take care of yourself and spend some time journaling your pains. Good luck Kootenay

 

 

Kootenay,   Thank you so much, I need to hear from people you have this disease. I need to know if there symptoms are the same as mine or an I just suffering from typical old age and arthritis. You have helped me a lot just because you also have the stiffness. It is a very weird thing that after a very short time its like you havent moved that joint in a year.                                                     Good Luck to you,                                                      Nancy

Nancy,

You sound so much like me.  It is unbelievable that someone can be in so much pain for no apparent reason.  Lyrica has been a miracle drug for me.  Look in your area for a Rheumatologist that is really up to date on fibro.  (Found that the general practicioners were not so up on fibro and were reluctant to diagnose and treat).  I found a great one several years ago.  Just recently had a major flare up and tried to get in to see her.   She was out on emeregency medical leave so they set me up with her partner.  She did not hesitate to prescribe the Lyrica for me.  I took one as soon as I got home and within 2 hours was able to get out of the chair without being humped over in pain like a 90 year old. 

I really feel your pain and hope you can find a doctor that will help you.  Keep us updated. Mary Sue

Mary Sue,  Thank you so much for responding. I have been thinking about asking to see a Rhumatoligist, Just wasn't sure if they saw Fibro patients. I think I will email my doc tonight and ask. Have a wonderful NEW YEAR!                                                                                                                    Nancy

I have been ill for 24+ years now and finally just got officially DXd with FM last year.  I have been to a top notch Rheumy in Ohio and he confirmed the FM and said I also have CFS.  I  had carpal tunnel surgeries this summer.  It just seems some new ailment is popping up.  I have been walking with a walker/cane for 3 years now.  I have degenerative disc disease and head to toe osteo arthritis.   I also have sleep apnea and use a cpap machine.  I was also DXd with COPD this past autumn.  I have been off work on disability a year now and am working on SSDI.  I am 53 and am in worse shape than my 92 year old Aunt.