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Runwithwolves

New member
Joined
Apr 25, 2015
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1
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Other
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US
State
Mn
Hi everyone! I have recently been diagnosed with myofascial pain syndrome. It took me a long time to get any doctor to diagnose me with anything at all. I have been suffering from tmj disorder, a sleep disorder and chronic neck and back tension along with a slew of other random symptoms. I also suffer from anxiety and depression. I am seeing a new doctor since my old doctor decided that I must be a hypochondriac because she couldnt figure out what was wrong. This resulted in a ton of notes in my medical records attributing my symptoms to anxiety. That made me pretty mad, but worse, it made me terrified to speak up about my symptoms again for fear that more notes would be added. My new doc basically said that he would not diagnose me with fibromyalgia because "those people never get out from under that diagnosis".He told me that before he even did the fibro exam or discussed my symptoms in depth. He did diagnose me with what he called "fibromyalgia like myofascial pain syndrome". I Plan to get a second opinion but as reluctant as he seemed he is actually the first doctor to try to help me cope with my chronic back and neck pain. I have pain in other areas as well but it pales in comparison to the neck, back and jaw pain. He gave me an rx for gabapentin and I took it and for the first time in years felt that I had some energy again. I will continue to take it. It has really felt like nothing short of a miracle to me. Even though I now have a label for the pain I have been experiencing, I still feel like people don't take it seriously and even had a close friend tell me I should try "positive thinking" to ease my pain rather than medication. It's so frustrating. I've tried everything in the book, I understand that my outlook is critical and that is why I have faced humiliation in the doctors office over and over again. It really is humiliating to have someone imply that it's not that bad, that it could be corrected if I did the right things. Having a proper diagnosis is critical to understanding what the right things are. This doctor also told me that chiropractic medicine is a "crock". I bit my tongue from saying that my chiropractor has given me relief when no one else cared to even listen to me. I feel like I have to bite my tongue and put up with criticism just to ensure I get the treatment I need. I'm just hoping that this medication continues to work and help me because nothing else has. Anyway, until I can find a doc that is not so biased about diagnosing people with fibromyalgia, I will take what I can get. It's just so unprofessional to tell someone you won't diagnose someone with a disease because in your opinion it does more harm than good. That's like saying "before we test for diabetes, I just want you to know I'm not going to diagnose you with diabetes because people who are diagnosed with diabetes are worse off than those who aren't" and then topping it all off with a "diabetes like disease". Seriously. That is not science. I'm scared to find another doctor though, they might tell me it's anxiety again and I'm not sure I can handle that right now. Any tips, advice or suggestions welcome.
 

kasmaflower

Active member
Joined
Sep 27, 2014
Messages
34
Reason
DX FIBRO
Diagnosis
08/2015
Country
CA
State
ON
I feel your pain. At the moment I have no idea what is going on with me other than I ache. My doctor has pretty much said I have fibromyalgia but I have inflammation in my blood work. He seems to brush that off. In fact he hadn't told me about it until I asked months later about the results of my blood tests. All I can advice is trying to get a doctor that listens to you. I am thinking of doing that myself, but I live in a town where there are no family doctors.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
How interesting that he has such a bias about fibromyalgia. That is unprofessional. I'm totally out from under the diagnosis! Fibro is the ugly step-sister diagnosis because it's had a bad rap for so long. Some docs today still question that it is a disease even with all the research. I know there is a bias about fibromyalgia. I use a cane on some days to help with balance due to nerve pain and fatigue. My own silly research notes that if I tell folks I have MS they tend to be very supportive and helpful. If I tell them I have fibromyalgia, I get less help and more comments like "are you sure, I thought that disease was all in people's heads."

It is also interesting that he prescribed gabapentin since it is a common first med for fibro. The good news is that both can be helped with some similar meds. The bad news is that there is no cure for either. If he's treating you well and listening to you besides the silly bias, I'd stick with him. It's hard enough to find a doc that treats pain seriously, particularly fibro or MFS pain.

As far as others telling you to just get over it, that's the difficulty with any illness that is invisible. People who don't have chronic pain don't truly understand what it is like to live with it. Heck, I've been told I have a sunny personality and terrific outlook on life, and I still have fibro. I wish you good days.
 

jaminhealth

Distinguished member
Joined
Apr 24, 2015
Messages
191
Reason
DX FIBRO
Diagnosis
07/1999
Country
US
State
CA
I'm not questioning anyone's pain, I believe I have MORE pain from OA and shoulder injuries and lower back mess all longtime OA. I could have this FM rheumatic pain, I feel it as...not a disease.

The fibro thing hit me in 1999 I'm told by Dr. St Amand who is the guai doctor, he prescribes guaifenisen for all the FM people who come to him....he's an endo turned FM specialist. He touched my neck area and said you "are fine" but you have FM. I just didn't believe it, but I came away with a Fibro diagnosed and I don't believe it's a disease, if it is what it is. An emotional trauma in July 1999 pushed my body into a fright/flight/fight mode which is hypothalamus related.... I've done a lot of work on this issue and when things hit me at certain times, with and without thyroid support.

An older rheumy calls it Fibroitis, a younger rheumy I see who is very alternative in treatment, calls it fibromyalgia....depends on their age as I see it ..

I had NEVER heard the term FM before 1999, but it's so related to rheumatism and that's what grandparents and mom had many years ago and took bayer aspirin or excedrin, or anacin etc.....today it's the mega drugs for this syndrome.

I use all supplements which include higher dosing of magneisum thru the day.

Inositol and Gaba are calmers and NOT drugs.... I have a hard time taking drugs.....J
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
I really think you should do some shopping for a new Dr. THAT HAS BED SIDE Manners. I personally think since the crackdown on opiates, Dr's are scared to death of loosing there licence
.Do a bit of study about FDA guidelines, you may find out your pain is something completely different than fibro, but none the less just as painful, then he or she might be able to help you further. I hear your frustration and I'm completely with you on this problem. That's why this forum is so helpful.Best of success!
 
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