Fibromyalgia Community
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Avatar universal

Long history of symptoms - Is FM the diagnosis for me?

Hi everyone. Let me introduce myself. I am a 38yo female who lives in WI. For years, as long as I can remember at least since I was 20, I have dealt with fatigue. I can remember when I met my husband and got married at 23 I would come home from work (no kids at that time) and just collapse on the couch and nap for 1-2 hours every night/weekends. I was so exhausted. When I was 12 years old I got hit by a drunk driven in a car from behind and got severe whiplash/cervical sprain and wore a soft collar for a while. Starting at age 13, I sought out a Chiropractor's help for sore neck and back issues. This has continued to this day, 25 years later. I go 1x a month. I have with various pains in other parts of my body over the past 6 years (since my son was born). I have been running back and forth to the Dr.'s with different aches/pains/ailments/complaints/depression, you name it, I have complained about it because of the pain. The only REAL problem I have had that I had to have fixed was a prolapsed bladder and rectum from childbirth (had incontinence) and was fixed with major surgery. Otherwise, I have been to the Dr. for pain during sex, pain in the abdomen, pain in the incision from my surgery that should not have lasted as long as it did (incisional pain) he called it neuropathic pain. Back pain (but do have herniated disks but not radiculapathy at this time), neck pain (again, herniations, but not bad enough for surgery). Leg pain, burning feet (bilateral), left knee pain, foot pain, ankle pain along with absolutely no reflexes in ankles, stiffness, lack of flexibility, restless sleep, wake up not feeling rested after 8-9 hours of sleep, VERY oversensitive to loud sounds-really hurts ears, teeth grinding at night, vaginal dryness, definately have "lack-a-nookie disease" because I never want to, burning eyes, dry eyes, tired eyes, headaches, congestion, sore throat, dry skin, dry hair, constipation all my life (big issue for me). It's weird because you can touch any part of my body pretty much and it will hurt. My hips, my thighs, my calves, arms, sides, like if someone pokes me, it hurts and I say "ouch". I have been like that for years.
I have had a very LONG journey thus far which brought me to a neuro as a 2nd opinion on the peripheral neuropathy the 1st neur diagnosed 12/5/07. This 2nd neuro last Thursday, said you do not have PN, I believe you have Fibrymyalgia.

He had accountability for every symptom I have. The extreme fatigue, the sore throat, the sinus drainage, the burning feet, aching back/neck/hips/legs/feet/ankles/arms, and on and on. All these years I wish someone would have just told me "I have a lot of patients that ache all over the place". But no one did. Just last week, I started feeling like a true hypochondriac. My God, I have been through the gammit of testing since October and ALL has come back normal.

I will include a list of what I have been through and you will see, all normal. I am still unsure of this diagnosis myself - only that I want to be SURE that this is what I have and not true spinal issues, but this neuro tested my strength and such and said my spinal issues are not to blame, but that other neuro was wrong, so why wouldn't this one be? I do believe in Fibromyalgia, I've read so much about it over the course of the weekend and especially today, but how could something so simple be missed for SO many friggen years? My history is so long that I can't even put it all here, you would all get bored with my post then LOL! ;) I have been tested for Carpal Tunnel 3x, normal. I have had tingling/numbness of hands/fingers for years and years, but not all the time. It comes and goes along with my burning feet which only started last September.

My fatigue is getting worse and worse with each passing week. I have acquired since December a swollen throat, scratchy and sore and it will not go away. I also have heartburn about 4 nights out of the week and have been snoring more. The neuro tried me on Gabapentin for the burning feet, had to go off cause that's when my throat started to get weird on me and then my blood sugars (not diabetic, we through all of that too LOL) crept up on me so I chose to discontinue it and I'm so glad I did, nasty, nasty drug. So, right now I am on Naproxen for generalized pain. Take one whenever, no set regimen as this was prescribed to me over a year ago when I was having breast pain :( Oh my , this is getting long, sorry!

Anyhoo, here's the list of what came out normal, what I've been tested for, etc. As for what I DO have - well, I have been diagnosed with Osteoarthritis/Degenerative Disk Disease, Vitiligo and at one time, Carcinoma In Situ of the Cervix, but have been fine ever since Leep Surgery. SO, that's it. Vitiligo is an autoimmune disorder, so I assume I have the generalized autoimmune thing going on and am susceptible to other AI disorders as well.

My Chiropractor has two done full evaluations on me, one in 04 and the other in 07. Both reveal significant myofascial pain and trigger points. I haveinsisted over and over to both neuro's that my pain is spine related, but they disagree and believe I do not need surgery and won't even refer me to a neurosurgeon. So, do I believe them?

The thing I don't get is my 1st neuro who was ruling out MS and ruled in PN - did an exam for FM and said I didn't have it. This 2nd neuro last Thursday did NOT do a FM tender point exam and said I do have it. Huh? I'll write more later, as this is very long now and like I said, I could go on and on about my history but I'll leave it as this for now. THANKS to anyone that can offer any insight.

08 – Diabetes (2 hr. Glucose Tolerance Test – A1C was 5.3-normal)
08-Bloodwork Ceruloplasmin (copper test).
08-Lumbar MRI – Compression right and left S1 exiting nerve roots. Dessicated L4/L5/S1.
07-Thyroid (several times!)
07-Brain MRI
07-Cervical and Thoracic MRI - No lesions but a mess with bulges and herniations.
07-Bloodwork: Lyme Titer, Lupus Panel, ANNA 1 and 2, VDRL, Immunoe/Extrophoresis, and B12
07-Ruled out Fibromyalgia
07-Nerve Conduction Studies - Normal.
07-SSEP (Somatosensory Evoked Potentials)
07-VEP – (Visual Evoked Potentials)
07-BAEP – (Brain and Auditory Evoked Potentials)
04-Ankylosing Spondylitis
99/04/07- Carpal Tunnel
04-Rheumatoid Arthritis
07-Low Blood Pressure
04/07- Diabetes (perhaps glucose intolerance)
96-HIV/AIDS (Insurance Co. required testing)
07-Disorder of the ear - (by Chiro) on 10/11/07
04-ESR Sedimentation Rate Normal in 2004

5 Responses
Avatar universal
Whew, and you're only 38!? Are you able to hold a job with all these problems?  I have the disc/degenerative disc problems myself plus fibro myself so I understand pain.  Have you considered going to a rheumatologist and getting the official diagnosis of fibromyalgia? They're the ones who normally diagnose fibro and prescribe the meds. Hardly anyone takes naproxyn for fibro anymore and with the amount of pain you have you need something stronger. Perhaps Lyrica will be able to help you if you have fibro or neuropathic pain?  Celebrex may be easier on your stomach for osteoarthris or the DDD in your back.  It sounds like right now you're not getting proper care. Good luck, hope you feel better.
Avatar universal
Yes, you are correct, the Naproxen doesn't do anything for me.  my regular doc called me yesterday and wants me to come in and speak with him tomorrow at 2:30 about the diagnosis this neuro gave me.  I am going to ask him to refer me to a Rheumy since that is who I prefer to be diagnosed by to be SURE of this diagnosis and to get proper treatment.  Yes, I am still working 30 hours per week, but let me tell you, I am very tired every day.  I am kind of just in limbo right now in what to do. I know I won't quit working, that is for sure, we need the two incomes.  Besides, I can get through each day, I'm just tired and sore, but I make it, I Have for years living like this, just didn' tknow it was the FM doing it (I blamed EVERYTHING on my back and neck problems).  I won't try Lyrica even if I thought it'd help me because I DO NOT want to gain weight. I am already overweight by about 50 lbs and I am trying so hard to lose it, but it's hard because I just quit smoking YAYAYAYAYAYA 3 weeks ago (can you tell I'm proud of myself for that? LOL) so it's doubly hard.  I gained 8 lbs. when I went on the Gabapentin (Neurotonin) and it was a nasty nasty drug that made me feel awaful and didn't help me anyway.  I want something that does not cause weight gain :)  GOt any sugestions?

Thanks so much for your post.  At only 38, I sometimes feel like I am 68.

Avatar universal
I was just diagnosed with fibromyalgia this past January.  I have none of the painful trigger points on a regular basis.  Only rarely do I feel pain.  However, I have every other symptom that fibro gives.  My rheumatologist has/had fibro too, and he's the one that diagnosed me.  He actually calls it "emerging fibro", since I don't have the severe pain.  He says there are too many people that go undiagnosed with fibro simply for the fact that they aren't in chronic pain.  He does not diagnose fibro based on the old standard of having the chronic pain points, he looks at the entire picture.  There's so much more to fibro then pain.  I thank God I don't have severe pain, it's debilitating enough to deal with everything else it brings.
1799509 tn?1315813356
First of all "Happy New Year for 2012" I hope it is a healtier one for all of us!
You sound very much like you have Fibro.  My symptoms are exactly the same and I have had this since I was 20 years or even younger and I am now 57 yrs.  It has been a lifetime of chasing this unknown thing but now hhave found out it is Fibro.  The whole body suffers and for the past 3 years the dry vagina and bottom has been horrendous and burning around that whole area and down the back of the legs makes it hard to even sit down.  I have gone from working 5-6 days a week down to 12 hours as I just can't sit or function with the "brain fog".  A terrible thing.  I have tried everything known to man and have spent thousands of $ trying to get some relief but the only thing is to go to bed early every night and don't break that pattern or you will be up the creek and I found out that a gluten free diet helped with the tiredness/fatigue, I have broken the diet over Christmas and have really suffered because of it. The changes in the weather really upset the body, the barometric weather swing is extremely hard to take also, damp weather is not good and cold.  I am looking at a different climate to live in at the moment where it is more stable and mild.   If I ever get an answer I will share it with you.   God Bless.  Valjoy.
1961085 tn?1325272683
I am new to this forum but,after reading your post-felt I really wanted to reply. I can honestly say I can relate to almost all of the symptoms you have. I was diagnosed with Fibromyalgia several years ago about a year after being diagnosed with Rheumatoid arthritis. I was diagnosed by a rheumatologist here in the UK (Scotland). Our weather is typical of the most of Northern Europe and if you were to look at a flat European map you could see a very real pattern of where Fibro has been diagnosed-straight across the top. I dont know where you live, but because of the cold, damp weather conditions over here Rheumatologists are now very adept at not only recognising but diagnosing this condition, (The majority of whom accept that it is a very real auto immune disorder-and not in our heads! Thank God,)
Anyhow-what I wanted to say was that your symptoms relate completely to my own-but not just in the case of Fibromyalgia-in Rheumatoid Arthritis also!!
I note that you were tested for this in 2004, but wonder what testing was done as if it was for the RA factor-this is not always present-neither do we always fulfill the ESR criteria.
My son has only just been firmly diagnosed with RA after having visited a Rheumatoligist anually for the past five years who kindly 'kept him on her books' because of the family history of this disease (my twin and my neice have also been diagnosed in the last decade).
Please believe me when I say that god knows I wouldn't want you to have to deal with a dual diagnosis i.e. the Fibro and the RA-but often there is huge relief to be gained in having a firm diagnosis-not only in terms of getting the appropriate treatment-but also knowing that you are not going crazy and these symptoms are REAL!!!

I note that you are going to be visiting a Rheumatologist again and please let us know what he/she has to say.

In the meantime - keep warm and safe.

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