Chronic Pain Diagnosis Frustration

[boshemia]

I made the appointment a year ago and I finally got to see the Rheumatologist today. It was awful! He was not what I expected at all. He went through questions on my family history, got hung up on me knowing very little about my biological father, asked me if I was married and I told him I was sort of divorced. He asked if he was the father of my children and I said no, so he wrote divorced twice... He asked about the events of the last year and a half especially the rape investigation... and that was it... seriously.

 

He poked me a few times and said no... it's not fibromyalgia, it's just stress. The rapist is getting out of jail again soon and you will go right back to being scared. I asked him about the pain, especially the rib pain... he said all you need to do is lose some weight and wear a better bra!!! OMG!

I agree I didn't even realize I weighed 186, (last I knew I was 155) I lost about 30 pounds this summer and put it back on when it got cold...

and yes I do have a big chest... but a more supportive bra??? I could stand to lose a hell of a lot more weight, exercise etc... He said I needed to take my muscle relaxers EVERY night to help me sleep instead of just when I was in pain.

 

I tried to tell him how far I've come as far as the PTSD, and when I mentioned the link between fibromyalgia and PTSD he said no. I've seen fibromyalgia and you don't have it. When you touch someone with it even a poke is excruciating... Ughhh!!!!

 

He didn't go into my medical history, he didn't ask about the pain either locations or levels... I was diagnosed almost a year ago by two different doctors, and they suggested I see him for treatment. I was so excited to finally get to see him and all he did was make me mad!

 

When we left I told my cousin (there with me for moral support) that I got the feeling that he was one of those doctors that had the it's all in your head approach...

 

So since I was sitting here with my pain all in my head, and wondering why he gets over $300 a visit... I thought I'd ask for your stories. I know other people have been through this run around, and thought it might be nice for all of us to vent and share how we dealt with the stupidity of the professionals.

 

Buy a better Bra! OMG! lol

[ShoeGirl]

I would go back to one of the doctors that originally diagnosed you with fibromyalgia a year ago and tell them that the rheumatologist they referred you to didn't think that it was fibromyalgia and said it was just stress... even if that is the case the doc probably should have given you some advice to deal with it. Maybe one of the original doctors will give you a referral to another doctor or treat you themselves.

 

Good luck!

[JamesM]

First let me say that many people will tell you it is in your head. I know....my wife has many pains. She was diagnosed with fibromyalgia about three and a half years ago. She is a sexual abuse victim...or shall I say, survivor.

 

Her pain began in her knees. It started while she exercised, so she assumed it was because of working on the treadmill or stairstepper. The docs first thought a number of things but finally settled at fibro. The pain in one knee went to two knees and then more joints. Yes, she had fatigue as well, and she also couldn't sleep at night due to pain. She was on antidepressants, ritalin, ultram (pain med), synthroid, sleeping pills and something else. Her moods were up one day and down the next. She had no libido. She was difficult to live with. However, she did not have pain in every pore of her body. I could easily touch her without her cringing.

 

Well, after a few years of this and very little sex, I was reaching my limits. I could not believe that this was to be our life. I began researching low libido on the internet. This is how I came here. You can check out my first thread. On another Board (Divorcebusting dot com) and here, it was suggested that I look into the thyroid levels more. Just because the doctors' tests said she was normal did not mean she was normal for her. And there was another medicine that could help. This led me to drlowe dot com. I suggest you look there for info regarding what you have. (Then come back here and report if it sounds like you at all).

 

When I looked at the website, I knew we had found something much bigger than low libido. I told my wife of the site since I had a hard time understanding it. She is a nurse...she can read the lingo better than I. She took the info to her rheumatologist and asked if he could switch her medicine to Thyrolar or some medicine that gave her T3s and T4s. He said no because he said there was nothing to what she showed him. I so remember that day last April. She was very depressed when she told me. She had had such hope. I suggested she bring the info to our family doc since he knew her better. Reluctantly he said yes. His words: "I am willing to try what you would like, as long as I don't think it will kill you." He has also been amazed at the change he has seen.

 

The results were amazing. She began using Thyrolar and umtram ER (extended release pain med) and nothing else. She gradually quit her antidepressants, ritalin, and other meds. Almost all of her pain disappeared and she no longer had fatigue. Best of all, she regained most of her libido. (This still fluctuates...sometimes good...sometimes low). I can never thank the people who brought me to that site enough.

 

I don't know if this will help, but the majority of people with fibromyalgia seem to have thyroiditis as well. Go to the website and see if it applies to you.

[boshemia]

Thyroid is where we started with the tests, because so many blood relatives have thyroid disorders.

 

They are just now beginning to find a solid link between fibromyalgia patients and childhood sexual abuse. At the moment there are many professionals trying to push for a combination of the terms Fibromyalgia, Chronic Fatigue and others into a new subset of Post Traumatic Stress Disorder. Fibromyalgia has also recently been linked to reduced dopamine levels in the brain.

 

Many times FMS is present for years but does not manifest totally until after a traumatic event. In my case it was dealing with being raped and the rapist stalking me.

 

I don't find it at all hard to believe that the disorder is "all in our head" but I wish professionals would realize that our head controls our bodies in ways we can't really understand. The problem might be in our head, but the pain is real. Some days even a light touch will be excruciating... it is even painful to try to sleep because of the weight of my body pressing on the bed. No matter what position I choose it just hurts.

 

So I don't really think it matters at this point if it is fibromyalgia or not, now that I have had some time to think about it. The pain is real, I know that. I do have issues with PTSD, but I have been slowly getting over them. The pain levels have improved quite a bit since last year when I couldn't take a step without a cane. I haven't even had to use one since June. I am only on my pain meds a few days a month now, the rest I can use Alieve (it's the only one that seems to help)

 

I've thought about it, and on all but my worst days I can deal with the pain for the most part. If I had to choose one symptom to "heal" it would have to be the fatigue. On my clear days the world seems so bright and amazing, there are colors I almost forgot existed. It's like those few moments after you wake up when you are just groggy and nothing really works right in your brain. I hate that feeling, and now that I am having more and more good days I am learning to appreciate the colors : )

 

It's amazing how hard we have to fight sometimes just to get a professional to listen to us. I realize that there are people out there who do things like this for attention, but even hypochondriacs have to really get sick now and then don't they? lol