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

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Old 02-27-2008, 05:53 AM   #1
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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. MRI was clean, said my brain looked great No spinal tap, he said not needed because of normal clinical exam and MRI. Had cervical/thoracic/lumbar MRI's, all have herniations/bulges some stenosis, but all mild/moderate.

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 Peripheral Neuropathy - 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
Breast Cancer Survivor 12/09 -Stage 1-Grade 3- IDC. ER-/PR-/Her2+. Neck Surgery - ACDF C6/C7 11/08. Bladder Surgery-Burch Procedure 2/06. THE LAST FIVE YEARS HAVE BEEN NOT SO MUCH FUN!
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Old 02-27-2008, 07:12 AM   #2
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Re: Long history of symptoms - Is FM the diagnosis for me?

to the best of my knowledge there is no blood test yet to rule out fibro just as there is no blood test to confirm it.

Old 02-27-2008, 10:43 AM   #3
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Re: Long history of symptoms - Is FM the diagnosis for me?

Something I read- fibromyalgia isn't tender points, myofascial pain syndrome is tender points- so, you could have fibro without tender points. People that have tender points probably have fibro and myofascial syndrome. Thus fibro is just confusing to diagnose!

I am always recommending a naturopath, because they see the whole picture. Not all symptoms might be related to one another and you could have one because of a vitamin deficiency, etc. Get your Vitamin D checked and ask about B-12.

Try and work on symptoms the best you can- a naturo can help with heartburn and sore throat. Was the breast pain like rib cage pain? That can be costochondritis.

Old 12-05-2008, 03:45 PM   #4
Join Date: Dec 2008
Location: Charlotte, NC USA
Posts: 1
JaniceM HB User
Re: Long history of symptoms - Is FM the diagnosis for me?

Hi Greenacres. I just joined the post and read your thread. I have myofascial Pain
Syndrome (MPS) after having my first child. I have met many people and your symptoms could be FM and MPS. My doctor put me on Cymbalta 6 weeks ago.
I was taking Ultram for the constant pain. The Cymbalta is an antidepressant but
has just recently been approved for Fibromyalgic type pain. It is amazing. I have
no pain. I still have the extreme muscle tightness and trigger points, but they
do not incapacitate me and I can go through a normal day. I do not take any other
medication. I still cannot exercise
but the pain is not a companion for me anymore. I also have to still see a massage
therapist for myofascial release twice and week and a chiropractor each week to
keep my body from becoming a cement block.

Keep looking for ways to ease your discomfort. The mainstream medical establishment
will probably not be much use except to prescribe medication - and as you have found
out you must be careful what you take. You will end up being your own doctor as you
know more about yourself they then do. Try all kinds of different alternative therapies, and different therapists. My therapists all apply gentle pressure - no rubbing or deep
tissue type stuff - most of the time they may work on my body through the sheet, not
even on the skin. For true Myofascial pain syndrome, compression works best. If it
hurts, its too hard. Good Luck.

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