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Is this issue Fibro
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Is this issue Fibro

Dear Expert,

The following is a description of what I have been going through for about 5 years now. My current Rheumy has diagnosed me with Fibro but I disagree. Sorry if it is long. I need someone else to look at it and tell me they think it is Fibro or not. I know this doesn't take the place of a doctor but I think there is something more going on than Fibro and I am looking for some direction in which I possible need to go. Thanks.

How pain started:

August 2008

1. Burning pain in groin area when sitting. Could not get comfortable sitting no matter what.

2. Later in August burning pain began in right buttock along with the groin burning.
   Tingling, pricking sensations, cold feeling and numbness began in the right foot.
   Relieved by standing. Stiffness in hip, groin, buttocks was present. Started leaning on the left buttock to relieve pain in the right and groin when sitting.

3. About 2 weeks later my burning pain in my left buttock began along with the right buttock and groin pain still being present. Tingling, pricking sensations and cold feeling and numbeness began in the left foot as well. Standing relieved the pain however stiffness in both hips, groin and buttocks remained.

4. Pain was there when lying down. Also muscles in legs would facsilate constantly. Ice packs on the lower back and buttocks seemed to help calm the pain down so that I could sleep.

September 2008:

1. All symptoms started in August 2008 still continued. New developments started in the upper torso, arms and hands. I noticed that my upper torso would tingle and have a prickly feeling. The nerves in the arms would tingle and I noticed that middle finger, ring finger and picky on both hands had a numb, stiffness feeling associated with the    issue.


November 2008:

1 .Insurance started so I went to my first neurologist. Explained the symptoms and the pain and all the instruction that was given was to sit on a cushion.

2. Went to my second neurologist who did a nerve conduction test and had an MRI done and all tests and MRI showed normal. Prescribed Neurotin (Gabapentin).

2009:

1. Didn't do much that year just keep taking Gabapentin that wasn't working. All symptoms    continued and grew worse. The pain would flucuate but remained in all the points that have been mentioned during August.

2. I did opt for a nerve block in the lumbar region. It seemed to relieve symptoms. However the symptoms returned after a few days. The strange thing that did happen when the symptoms returned was how it did. The groin would spasm sharply causing pain and would awaken my from sleep. The the buttocks pain returned, lumbar achiness and pain returned.

2011:

1. Went to a new neurologist and did some new MRIs. Nothing was found excepte some issues    my C5-C6 disk, L4-L5 disk and L5-S1 disk. I still have not been able to sit at all due to the extreme pain in the buttocks, nerve pain in legs and feet. Standing was the most comfortable due to no pressure being put on the buttocks or legs. I did notice that when lying down on a hard surface the pain would slowing disappear. But once I stood up and started sitting again all symptoms returned.

2. I finally went to a Rheumatologist towards the end of the year. She had a bone scan done  that showed some arthritis but I never recieved a follow up appt or a clear explanation due to the Rheumatologist retiring.

3. During this year some new developments started. Recurring pain was still there in the    buttocks, hips, and groin. The tingling in the upper torso, arms and fingers remained.    Also the lower abdomend also began to tingle as well. Fatigue was also starting to set in and I would have flare ups in the groin, hips, and buttocks. The whole spine would feel on fire and the neck also began to burn as well.

2012:
1. Found a new rheumatologists who listened to all that was going on and did the normal blood work for the various autoimmune diseases. The test comes back negative again. However she said that with my symptoms it could be sero negative RA and started me on  Methotrexate and Prednisone. It seemed to be helping some. However, the pain in the buttocks remained and sitting was very painful and difficult. Even sitting for 4 - 5 minutes I couldn't stand it anymore.

2. I started a new job in Ohio so I could not longer get the prescpritions prescribed by the rheumatologist. So I found a new rheumatologist and had all my records sent to this new doctor. Again blood tests were done again and nothing was found. She said it was a lack of sleep. I did not like this doctor since she was not listening and not continuing    treatment that was given by the last doctor.

3. Found my current Rheumatologist and explained all the symptoms I had and she said that it was Fibro. She has me on Lyric (300mg daily), Tinzanidine (8mg nightly) and    Meloxicam. This is doing nothing for me. I do not believe it is fibro since I have the same pains in the same areas as I have always had.

Current:

1. Pain in buttocks, groin and hips is excruciating. Standing relieves the buttock pain. The nerves in the legs still tingle, burn, and the outside toes on each leg are numb, feel stiff or hurt.

2. The lumbar area is very achy and the pain, achiness coincides with the buttock pain. I have been noticing when I move the lumbar I can feel tingling in the penis, and groin.

3. The neck is painful and I still have the tingling, burning and nerve issues in the arms  and hands.

4. The whole spine feels stiff and actually feels like it is burning. Even touching the spine causes pain. When I lay on the spine it feel like the spine is stiff and it also feels numb along the length of the spine on both sides.

5. The nuckles in the hand in those areas where the nerves are affected actually hurt like they are rubbing bone on bone.

6. Nerves are very irritated. I can feel the nerves jerk in my eyes when I turn them, nerves are irritated everywhere. Nothing is helping not even the Lyrica.

7. The Fatigue is still present.

8. The balls of my heels have been hurting as well as the Achilles Tendons hurt after sleeping or staying still for a little while.

9. I have noticed that cold water (like the lake or sitting in a cold water bathtub) actually seems to make the burning in the spine, buttocks, arms, legs almost none existent. Swimming in the lake is the best.


Conclusion:

I do not think it is Fibro due to the nature of how the symptoms started and progressed. The symptoms currently are slowing worsening. Also the pain is consistently in the same areas and spots as when it started. I never have Fibro fog or any other issues. When I exercise it seems to do better but starts to get inflamed when I am at rest. I play basketball every once in awhile and I don't notice the symptoms as much as when I sit or am at rest. I am going to find another neurologist and Rheumatologist to get another diagnosis. This was written because it is better for me to write my issues then say them when I am at the doctor.







2 Comments Post a Comment
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1530171_tn?1362547225
Hi jaydog1976 and welcome to the forum.

Firstly, I just want to let you know that this is a members' forum,
not an Expert forum. There might be a medical doctor occasionally
contributing with her/his professional opinion, however it is mostly
regular members usually sharing ideas and suggestions and /or asking  certain questions regarding their own situation or someone's close to them.

It does not seem that you had an official FMS diagnosis.
It is reasonable to suspect that you do not have FMS.

The 2010 diagnostic criteria are very specific:

1.Pain in all four quadrants of the body and in the axial skeleton (bones of the head, throat, chest and spine) that's been present on a more or less continuous basis for at least three months.
Pain in at least 11 of 18 tender points, which are specific spots on the body that hurt when pressure is applied.

2.The widespread pain index (WPI)

3. The symptom severity (SS) scale score.

Do a search for more details.

You mentioned you have issues with the C5-C6 disk, L4-L5 disk and L5-S1 disk. Can you elaborate (very helpful if you have a copy of the MRI report)? And would you know the cause ( or do you have a suspicion ) of the disc abnormalities?
This could be important!

Have you experienced in the past any trauma physical or emotional,
any serious infection, major surgery, any accidents etc.?

I did not see anywhere in your post that you were tested for deficiencies, only some blood tests.
This is something very fundamental. Things to look for :
B complex and specially B12. Vitamin D, Serum AND Tissue minerals (tissue mineral levels obviously  do not show on blood tests),
electrolytes and neurotransmitters (this is tough one, as doctors don't bother and insurance won't pay).

Finally, have you had a sleep study done?

I'll get back to you after you post your answers.

Note: This is not intended as a substitute for medical advice.

Best wishes!
Niko



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Avatar_m_tn
Niko,

Thanks for your response. I am not sure why I put expert there so thanks for the catch. I think I saw the word expert and since I was tired at the time it stuck in my mind.

Also I will try to get the other information. The blood tests came back with normal vitamin levels and no deficiences were found there. I have never had a sleep study done so I couldn't answer there.
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