[kiwiguy]

Hi just new here but I'm so glad that this forum exists.
A couple of weeks ago my GP told me he thinks I have fibromyalgia. No big surprise to me, I've been asking him for years if I do. He already diagnosted depression, ostioarthritis, tendonitis and herniated disks. Now the part I don't understand is, how can he say I have fibromyalgia and the next sentence say "come back in a month to discuss it"? A month? No treatment? No referral to a specialist?
Yes, I know that I should have asked for a referral, but I wasn't thinking at all at that point. I just went blank.
My big question is, since this doctor has been pretty much useless to me for years, where do I go next? How do I find treatment for this? How do I get information? Should I try to get another GP? Thanks... kiwiguy.

[sabby]

Welcome to PC kiwiguy!

If you want some good information on fibro, check out the Mayo Clinic website. I refer to them a lot for medical issues and I always find them to be very helpful.

http://www.mayoclinic.com/

Do you see a specialist for your arthritis? If so, you probably should speak to that doctor about your dx.

Some general practitioners may have a good background in dealing with fibro, many do not. Some believe in it, some don't. Regardless of this, if you don't feel you are comfortable or getting the right care from the gp you are seeing now, by all means, do some shopping around and find someone that fits your style more. Also, second opinions are a good option as well.

For the next month before you go back to the dr., do some good self care. Rest when you need to, that's very important. If you have any meds that you take that help with the pain, use them when needed. If you are having difficulty sleeping, try to have a schedule each night, that may help you get into a routine. If you exercise you can continue to do so, but don't push yourself past your limits right now. You don't want to overdo it and find yourself hurting way too much or too exhausted to do anything else.

If you find you are foggy brained, make notes of everything. I'm having to get into doing that now myself. It's kind of a pain, but it helps to have something to remind you of what you need to do and of appts. etc.

If you find that weather fronts bother you a lot (they do me!), keep an eye on the weather so you can plan around it as much as possible. If you know that one is coming through in a day or two, try to get stuff done before it hits so you can do your self care on the days when you are feeling like garbage.

Fibro is a pain...literally. But, it's not life threatening, just life altering. That's probably why the doc didn't schedule you sooner than a month out.

I wish you well and hope you get some answers soon!

Take good care,
sabby

[kiwiguy]

Hi again. Thanks for the welcome, sabby.
First, about the Physiatrist that I saw for nerve pain and arthritis. He said that FM is "not a real diagnosis" just made up. So he's out as far as help with this. By the way, I also saw a Psychiatrist a few years ago for depression and suicidal ideation and I told him as well all about the pain and symptoms like Fibromyalgia. He too said 'no such thing'.
Sady I would love to do some self-care right now but I work shifts and my job has been really stressful lately. I'm sure this adds to my pain and symptoms are great deal. A short version of this is, I've got some work injuries (carpal tunnel, neck and back problems) that make me work light duty jobs for now, But with ongoing job cuts my days of working there are numbered. So for now I do final inspection on a critical product we build and the pressure is on to get this product out and be perfect...or else more job cuts. Ironically, next year (May 2013) we will have more jobs cut anyway and most likely I will be out of a job after 23 years at this place.
Now with 3 kids living at home, 2 of them in college and lots of bills to pay it's easy to see why I can't just take a vacation.
I could also have a small med problem. I stopped taking amitriptyline in Jan and stopped welbutrin in March. I'd like to try cymbalta again but I would need to get a rx again. and I can't take gabapentin or topamax because of side effects that make it impossible to work, like dissiness and brain fog.
Next I'm looking for a psychologist or soc. worker to help me with anxiety issues but all the ones I called fo far are not taking clients for a couple of months. Take care ...kiwiguy

[AnnD]

I've had Fibromyalgia for almost 12 years now. My GP has been the one to treat me for it all along. However, I've had to be very proactive and educate myself and ask him for specific drugs as they came out onto the market. I'm the one who told him that I had it and told him all the symptoms I had. At the time, I don't know if he believed in the disorder or not, but he did acknowledge that chronic pain syndromes do exist. Over the years, three drugs have been developed to treat Fibro pain: Lyrica, Cymbalta, and Savella. Lyrica worked the best for me, however after 4 1/2 years it stopped working. I was on Cymbalta for 2 years and then the side effects gradually became too much. Now, I have recently started Savella.

You do not necessarily need a specialist, but you need a better GP for sure. Yours doesn't sound that helpful. You could call a few different GPs and ask specifically if they treat and are familiar with Fibromyalgia. I know that a Rheumatologist is the specialist that Fibro patients are generally referred, too, when a GP decides a specialist may be needed. However, I have always been a little confused as to why it would be a Rheumatologist. With my years of experience with Fibro, it seems to me the disorder is one of the central nervous system and neurotransmitters. It's seems to be about how your brain interprets pain. I would think a neurologist would be better.

But whatever doc you go to, ask about taking one of these three medications. Looks like you've tried Cymbalta before, if it worked before that may be a good choice to start with.

[kiwiguy]

Hi there AnnD. Thankyou for the reply. Sorry for the delay in wrighting this but it continues to be a struggle nowadays to get anything done. I'm sure you understand this since you are living with fibromyalgia yourself.
You remind me that there is another GP that I can talk with about this. When I was getting help for an alcohol dependance problem a few years ago, the Doctor at the treatment clinic was available for any mental health issues. He helped me get off of Effexor and change to wellbutrin.
I'm thinking he might be the place to start for information and possibly treatment. Also now that I think about it he was the one that prescribed cymbalta. Could be that he suspected I have fibro long before my own Gp mentioned it.
I agree with you that a neurologist should be a primary treatment doctor for fibro, or a neuropsychologist as well. For some reason they arn't. Short supply? Lack of uptodate education? Not sure.
Thanks again, AnnD and take care.

[Perna]

I like the Government site: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

and getting to know my care givers well enough and understanding one another enough. That can take time but be very rewarding. I have pain when I have my blood pressure taken and often, especially in ER's they yell at me when I complain (not helpful) and I was telling this to the nurse at my doctor's office the other day and, surprisingly, she understood well, had been an ER nurse and knew exactly what I was complaining about and had a couple of excellent ideas for me.

Finding and talking to others with fibro and making sure you have a doctor and medical personnel who understand and are helpful, not just "going along" for the ride is a must.

[Travelinglady]

I'm surprised that some docs still don't believe in it. That was a battle fought for years, and I thought it was won. Sigh.

I have read there's some thought that's it like a type of arthritis. Maybe that's why a rheumatologist has been suggested. There's actually a doc in my town who specializes in fibro. I went to him, but it seemed he has the opposite problem than those other docs. It's like he thought most every ailment I have is due to fibro. Sigh on this one, too.

I take Ultram as a pain reliever, coupled with Tylenol. It doesn't make all my pain go away, though. Like you, I also have spine problems, as well as osteoarthritis. By the way, I was put on Vicodin by my neurologist, who was hoping to help my pain--and I got worse. My GP said that Vicodin makes fibro worse! It certainly must have for me!

These other nice folks have given you some great resources and suggestions. I do hope you'll feel better soon.

[kiwiguy]

Thanks again for the replies. I'm so glad that I posted the questions here, it's been really helpful.
One thing that I just remembered is that a couple of years ago I was part of a concurrent dissorders therapy group. (people with addiction and mental health issues at the same time). A few of the group had been diagnosted with fibro and I was thinking, should I try to contact the moderator to ask if she knew of a doctor that treats fibro, with success, that I could ask for a referral to?
Hey worth a shot. Maybe?
Oh by the way I live in Oshawa, but I would travel an hour eazily to see a good doctor for help with fibro. Take care group.