Fibromyalgia Support Group

Hi all!

It's been a while since I've posted

So I've been in a major funk and have had what feels like the worst flare-up that has now lasted for a couple of months. I have a great rheumatologist and love him dearly but we seem to have hit a wall as far as treatment goes. He simply does not seem to know what else to do for me and the pain I am in. He said I have to "keep moving" and I totally snapped at him and said "YOU keep moving!! How can you tell me that when you have no idea the amount of pain I am in??" He was referring to exercise which I have not been able to get back into because I am in so much pain. As much as I want to be healthy and lose weight, my body just refuses to cooperate with me to get going. It seems so unfair - to have the motivation but not be physically able to is soooooo frustrating.

Anyway, long story short he approved a visit with a Pain Management specialist which I am seeing tomorrow. I don't know what to expect and know not to get my hopes up but was wondering if you all could relate back to me any experiences you've had with these types of doctors since this will be my first time. I'm already feeling myself get defensive and haven't even met the doctor yet! Years of being treated like "nothing's wrong!" can do that to you I guess

Hope all is well with you all!

xoxoxoxo

Rose

Let us know what the pain specialist says.. hang in there we will get you moving once they tame the pain a bit!!... it hurts alot at first but after awhile it makes tou feel better... hang in there !

I'm big on the pool therapy. I tried regular Pt and Pool both, and couldn't do the regular, it hurt too much. But the pool's great. Not to mention my treat... the hottub afterwards!

Rose,

I have been going to a pain management clinic, but I hope that my experience is not typical. I was promised by him that they were gonna help me by reducing my stress, and getting "my mind and body" on the same page, therefore alleviating some of the pain. None of this happened. I walk in, they give me my prescriptions, pat me on the head and I pay $100 on the way out. I have decided not to go back.

I'm not trying to scare you, as like I said, I hope this is not typical. The only good thing I can say is that they don't hesitate to prescribe meds. I am on two narcotics and an antidepressant. I was also getting sleep aids, but stopped taking them.

I hope when you go, you will get some help, and that they will treat you well. I'm sure there are places out there that do. Let us know how it goes, and hope you found a competant clinic. HUGS

Thanks so much for all the support! I saw the specialist today and am actually pretty optimistic. She is putting me on savella which I've never tried and a stronger (Norco) pain killer for the day-time to see if this eases my pain. She was really nice and supportive. Sometimes I think all it takes for us is just to get another perspective and have someone be compassionate and caring. Anyway, just wanted to let you know how it went. Hugs and Kisses to you all!

Hi all. My symptoms began after a case of fifths disease 7 years ago. Four years ago I was finally diagnosed with fibromyalgia. I was given vicodin (5 mg)twice a day and sent home. At first I felt a lot better, probably because I was finally able to sleep. But I kept getting worse. When I told my doctor this, she gave me a muscle relaxer. Which helps when it's my muscles...sometimes. I went back while my doc was on maternity leave and her nurse practitioner bumped me up to 7.5 mg 3 times a day. I've been at that dose for two years and my body is used to it. So I asked her is there is something else she could try and she asked me who diagnosed me with fibromyalgia (she did) and she denied it. (Though the dx is in my records.) She sent me to a rheumatologist who did a bunch of tests and has said I do not have RA but he thinks I have fibromyalgia with joint involvement and prescribed prednisone and methotrexate. Which helps with my joints. But I am still massively sore and stiff with severe back pain. So I return to regular doc who says she can't bump up my dosage for vicodin because then insurance will stop covering it for other patients. She said insurance expects me to have a plan to get off pain meds after a month and I said GREAT, let's do that. She looked at me like I was crazy and walked out. She then had her med assistant ask me to leave and refused to refill my pain meds for 3 days. (Last time I tried to get her to PLEASE help me! she made me wait a week to refill my meds.) But her assistant said she'll tell my doctor I want to be referred to pain management....which has not happened, but a physical therapist called me. I was wondering what other people do for relief and also why my doc would refuse to help or to refer me for pain management? (Sorry so long)

Also, my doc had a med student with her last time who told me fibromyalgia is half psychological. Anyone else hear this?

Post edited by: becca75, at: 03/29/2013 02:48 AM

I also wanted to ask if anyone has tried massage? I bought a groupon for a 1 hour Swedish massage but I am scared to try it. If I take a pain pill and go, will I be worse in the following days?

Becca, all I can say is you need a new doctor! She treated you horribly.

Becca, get a new doc!!!!! That is ridiculous for a professional to treat a patient in that manner....

Massage, I have seen others say it is fabulous and does wonders for them, me - it felt marvelous at the time, but the next 2 months was a killer trying to overcome the pain... so like everything else, it just depends on you and your body... only way to know is to try it... let us know how it goes! come to think of it, I think someone has mentioned there is massage therapists especially for fibro patients... be sure and let them know you have fibro before they begin.. that might make a huge difference... mine was prior to diag..

Wow!!!!! That is one terrible doctor you have.

First off sorry I've been gone for a long time.

Not long after I wrote this I went back to see the pain specialist after she ordered some routine MRIs of my neck.

They discovered I had severe cervical stenosis and I had surgery in November for it.

How I wish that was my only problem but I still do have fibromyalgia and a host of other painful issues. I'm also a long way from recovery from the neck surgery as it is still very painful every day

But I digress.

Fibromyalgia is most definitely not a psychological issue.

It is real and it is very painful as everybody here knows.

I suffered for about four years before they knew what was wrong with me.

I probably saw about five different doctors and had one of them told me that I needed a shrink not a medical doctor

Please don't let a really bad doctor get in the way of what you need to survive this.

Do some research and find a good rheumatologist that can help you along your journey.

This is a great group of people who really care and want to help so you can always find support here. Best of luck to you and let us know how everything goes!!