Old 06-15-2017, 03:38 PM #1 (permalink)
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Question New and searching for info....

My massage therapist was the first to mention the possibility that Fibro may be what is causing my pain and tightness in my muscles. Ironically, I went to massage school some years ago and we were schooled a little about "WOMEN" with Fibro. One of the male instructors went so far to say that this is one of those
" all in their head " diseases but " we need to be sensitive to their complaints ". That said I am certainly not agreeing with that sentiment or any other part of what I thought I knew or was told. But I did hold onto the notion that only women got this disease. Now I find myself with this strange pain and it's getting worse while all doctors that I have seen tell me that it's Osteoarthritis in my spine and throw every kind of pain medication at it without much success.

I have not yet found a rheumatologist to meet with so I thought about finding a Fibro forum and here I am looking to find some information that I can use to at least take an educated guess. From all that I've read so far it sounds like it is very possible that this thing has been growing wild inside of me and I find myself rolling around on the floor trying to iron out the stiffness and to find a few places to quiet myself so I can rest a little. When the pain is the worst I can't find a comfortable position to stand, to sit, or to lay down so I sometimes go a week or more with 2 hours sleep a night and it's never 2 hours all at once. To even imagine 7 or 8 hours of " uninterrupted " sleep is a dream in and of itself.
( pardon the pun )

In any event I want to ask to be pointed in the right direction...maybe to some links here that will be helpful. Maybe some of you can ask me for details instead of my rambling on even more than I already have.

So that's it.

BTW I'm a MALE
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Old 06-15-2017, 07:47 PM #2 (permalink)
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Default Re: New and searching for info....

Welcome to the forum,

First let me validate your pain and discomfort. Fibro generally presents itself as overall body pain that seems to travel from place to place. Sometimes it affects the legs, other times the shoulders, and so on. It may involve one side of the body while other times both. The pain is deep tissue radiating right down to the bone. The pain involves muscle, tendons and ligaments. Some describe it as aching while others describe electrical shooting pain. The intensity varies. What is common is the pain is relentless, like severely pressing on a raw nerve. It is hard to anesthetize with analgesics, which is why Cymbalta is used as it tends to help neuropathy. Sleep disturbance is definitely at the forefront of this condition. What you describe is what I also live with. Like you, I can not lay in any one position because of the pain. Weakness and fatigue can be debilitating. The symptom list is endless. I don't understand why your Rheumatologist has not examined you for Fibromyalgia as it often goes hand in hand with Osteo and RA. Hang in around this forum. You will learn much more about FM and the challenges it presents.
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Old 06-16-2017, 04:50 AM #3 (permalink)
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Default Re: New and searching for info....

MM,

Thanks for responding. One ( me ) is not sure how a Newbie will be received in a new forum, so thanks again; it was good to see your reply.

Sorry if I somehow did not make it clear that I do not as of yet have my own Rheumatologist as of yet. And to be even more specific I have for many years now mostly received health care from the Veteran's doctors at VA Medical Centers. In fact as time passed I didn't realize how different seeing a doctor on the outside was compared to the last time I used a doctor outside the VA. So, for instance, when I went for a so called 6 month exam on the 14th My PCP seemed to selective hear what I was telling her and after mentioning what my massage therapist said to me about Fibro, she said nothing. I then specifically asked if this particular facility had a Rheumatologist. They have one and so she suggested finding one outside the VA and that was that. I drove 42 miles in really bad weather to the VA and was there for 6 hours with blood testing, waiting, and asking for records to bring to my current PCP outside the VA but in a different state. After getting home and having a little dinner I knew it was coming on ( Fibro if that is what it is ) This part that I call " coming on " is the thing that made ME think that it's not just arthritis in my back.
As you mentioned the attacks are not always exactly alike although there are similarities to each episode. After years of this to a lot less severity I always know THIS TIME my back pain is NOT like other times. I've told some people that it makes me think about a vehicle that is getting old and getting new problems. It may have a transmission that slips, but it also stated burning oil, then oil started leaking, then it became difficult to start. It's not something that
" a tune up " will fix. Each thing is different for the most part but they MIGHT be related. An MRI of my spine revealed this " severe arthritis " which never appeared in my MRI's of the past. The earlier ones presented degenerative disk disease with a little arthritis. So the VA's answer to this is lets try some new pain medications. Meanwhile this things was morphing into something that I had never experienced before and several very specific complaints seem to me to indicate something other than what they found but ignored.
One of the symptoms that happen with me is not anything that I have read about as of yet from websites to this forum. Maybe if I mention it others will say that happens to them too. Before the pain gets to it's worst tears pour out of my eye's. It's like something inside of me is crying. So I tell the doctors: " I find my self crying but not boo hoo crying. " But when I say that no one has ever questioned me further and I wonder if this is nothing to them. And another thing is THE FLOOR. I see and focus on the floor as the only place I can find some relief. I also can't talk; at least not well and certainly not much. I want to hide and be alone because I don't want anyone to see me like that or to feel helpless not knowing what to do or worse yet suggesting the ER I do not like the ER and now refuse to go unless I've been shot, stabbed, or am having a heart attack.
Oddly enough I was surprised to read that arrhythmia may also accompany a fibro episode. That sorta explains what the cardiologist can't find telling me: " you have the stamina of a 30 year old " nice to hear but why do I get these strange heart beats?"
In any event, I can go on and on about each facet of what happens but will that help anyone here say for sure that is what I have? I think not but I am interested to know what you have to say and what your experiences are, as you told me in your reply.

I'm in search of a Rheumatologist now but have been told I may need to wait 6 months to see one as a new patient. For now I can only take the meds I have, go for massages and acupuncture and two people are filling me in on herbal supplements

Thanks again for your feedback and reply!.
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Old 06-23-2017, 04:35 AM #4 (permalink)
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Default Re: New and searching for info....

Hey dear friends, i was diagnosed in march 2017, but in my area i have only clinic where they can prove it, would u recomend me to go some other specialist for diagnostic?
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Old 07-03-2017, 06:01 AM #5 (permalink)
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Default Re: New and searching for info....

Quote:
Originally Posted by Glactiond View Post
Hey dear friends, i was diagnosed in march 2017, but in my area i have only clinic where they can prove it, would u recomend me to go some other specialist for diagnostic?
I'm attempting to catch up on messages I missed or wanted to respond to for one reason or another.

The part where you say : " some other specialist " ( for me ) makes it a little difficult to say with certainty for this reason(s) From all of the feedback and reading that I have done on this forum it seems fairly certain to me that finding a right answer is a hit or miss possibility. The so called " nature " of this disease or problem which ever the case may be is or at least seems to me to be conditional on so many factors many based on what you call it and what the doctor that you believe calls it or perhaps tells you what HE/SHE thinks about it.

If one has the where-with-all to go to the doctors, clinics, or places that have had positive results and feedback from those who suffer the multitude of symptoms and other aspects of this condition, then that would be what I would do. I would travel to CHINA if I could be sure that relief and a profound understanding of ME and MY version of Fibro could be addressed.

Not everyone has that " where-with-all " to go where the possibilities reside.

Someone lives in Lake Worth FL. Maybe that is you and whomever it may be I can say that I read about a doctor in Lake worth who practiced the stem cell procedure that has mixed reviews from other doctors and clinic institutions. But my back pain was so bad that I called to find out what exactly was offered. I was first asked about my insurance; as so many, if not ALL doctors do these days. Personally that question rubs me the wrong way; not that it's not a fair question but more often than not it does not inform the doctor or his staff on my ability to pay out of pocket and they often do not give one a chance to say: " Screw the Insurance, I can pay out of pocket no mater HOW MUCH you charge.

But most people can NOT pay out of pocket so the process goes on ad-nausium.
I paid out of pocket; it was not crazy money to get an evaluation and the doctor was honest with me by tell me that the stem cell procedure would more than likely have little effect on my condition. It was worth it for me to pay the $430.00 to get a 2 hour exam and review of my films.

So at the end of this long reply I would say: if you can find someone who understands Fibro at least call them to get verbal feedback before you commit to a visit.

That's my 2 cents.

Good luck and let us know what you find out!
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