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Who should I see to help me manage my fibromyalgia?
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1975transplant posted:
Because I have an appointment at the University hospital and clinics for a check-up on my kidney transplant, I thought I would get a second opinion on my treatment for fibromyalgia while I was there. (It's a seven hour trip that I don't make any more than I have to.)
The transplant department sent me to Neurology for an appointment. Neurology sent me to Rheumatology. Rheumatology sent me to the pain clinic. Fibromyalgia encompasses so much more than controlling pain. Is that who I'm supposed to see? Doesn't anyone treat fibromyalgia as a whole any more?
Thanks
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maggiethedoglover responded:
Hello 1975,

My regular doctor, who is in Internal Medicine, has been wonderful to me. She knew about fibromyalgia before I came to her but I also believe that we have learned a lot together. She is open to my suggestions and, if a medication is not working, she will have me try something else. She referred me to a rheumatologist but he said I didn't have arthritis and sent me back to her. I couldn't be happier with any other doctor.

Good luck to you.

Soft hugs,

maggie

Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
 
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booch007 responded:
I can see the bump around they gave you.

I am in Neurology for my care. The myofascial arm in that department gives me my meds, follows my needs and gives me trigger point injections to keep me up and running.

Years back it was said at the Rheumatology meetings that neuro is where we belong as this is so brain chemistry related....but rhuematology IS the specialty that has cared for it all along. When I see them failing at helping, pain management is the next avenue.

You still have Physical Medicine and rehab (Dr P here) PM&R.
They help with some holistic approaches as well.

IT IS ALL ABOUT THE FIT. Your internist maybe the best. It just matters who knows the path of FM and how to approach your issues.

YOU also can be empowered to be your caregiver by buying the books out there of this problem. I am a bit different then others here I have palpable trigger points, not tender zones....and I follow the Dr Travelle and Simmons path of "fix"
Every two weeks I receive these injections (30) around all where I have my issues and then the muscle twitch and release and I am moving forward. I am still stiff in the morning, headaches and pain in the day....legs stop functioning at times and I challenge myself as others here to keep on "draggin this dragon" around!

My favorite book is FM and Chronic Myofascial Pain by Dr Devin Starlanyl. I got it on Amazon.com. It has the reason for symptoms and the fix for you to help yourself too.

Good luck. Remember it is all about the fit* with the doc. Does he listen, is he knowledgable, does he have tricks to help? We are the icing on the cake after that.....the right meds and daily mantra of stretching heat fluids and movement....all add up to better.

Nancy B
 
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1975transplant replied to booch007's response:
Thanks to Booch007 & Maggie,
My local primary physician is very helpful and listens to me and is willing to try new medications. Some have helped and some have not.
You are right about self-education. I have 3 books that have helped a lot in understanding this condition and in getting me to exercise daily and get moist heat in two showers a day.
Recently acupressure has helped some. I have not heard about the injections, just deep massage, which I have not tried yet.
Right now my biggest struggle is to get a good night's sleep. It seems like all I do is get down to the dream stage, and that's with Clonazepam, Gabapentin, and oxygen to help me sleep.
I was just hoping for a second opinion -- something to try that my primary doctor hasn't thought of (and that the transplant team will let me try). Fighting fatigue is the most discouraging part for me.
One limitation I have is that I get leg cramps after 1&1/2 hours of travel. I live in a rural area and any kind of specialist is at least l hour and 20 minutes away.
Thanks you two for your help and suggestions. I appreciate it.
 
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booch007 replied to 1975transplant's response:
Well, frequent stops to walk around should help your cramp issues. YOUR over health is so important......get to a specialist.

For the sleep I have to share one of the biggest PEARLS OF WISDOM I got here on the board from the OLD fmily......

A memory foam mattress on top of mine.....I am up to 6" now, boought on Overstock.com....Man it is "BUTTER". It is the best. You sink into bed and the tender spots, trigger points..no longer wake me up....

I tossed and turned all night long to get off these spots and had subliminal sleep (no value what so ever). This is how I came to neurology for my care.

The numbness to the hands in the morning and turning in the bed all night. I thought I had a brain issue.

YES. I do have a brain issue and everything below it! Ha!.

So try this . I started with 3" from Kohl's on sale with coupon too. then found the O.S. sale and went for BIG....

Good luck, I am thinking it will make a difference in the night. The other trick I used was to sleep in a recliner with my neck roll...I wasn't bothering the body with the gravity loss, so I slept pretty sound. Mimi sleeps in a recliner.....maybe that is an idea for you.

Hugs and good luck, Nancy B
 
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dollbug responded:
Hello and welcome.....MiMi in NC....I think others have provided you with some good advice....I did want to say that most of us FMers have multiple health issues...and that I have found that any and all health issues must be addressed for me....my family doctor is good...but there are times when we do not agree...and I had to *stand my ground*....in the beginning when I first got sick, my doctor decided I was depressed...and treated me for this...but I had multiple health issues...we were trying different kinds of medicines but I was NOT getting any better...I think this is the first sign in knowing that something else must be going on...when you continue to have to see a doctor and what they are doing is not working....and in my case, I continued to get worse...

Like I said...my family doctor and I had words in the beginning...and I still go to him...he now treats me quite differently than he did in the beginning...I do NOT like going to doctors anyway...I consider them my *last resort*....which is perhaps not a good thing to do...

I have had quite a few surgeries though which is what it took to allow me to get better...there are some *health issues* which will continue to be problems for us...unless they are addressed properly...one of mine happened to be parathyroid problems...which I now know is very difficult for some doctors to find...

I hope you will keep on keeping on....until you find a good doctor who understands what is going on with you and is willing to help you OR at least send you to someone who will....

It can be a difficult process....as it seems like everything that we FMers deal with is...

I do want to say that *sleep and getting enough of it* can make a really BIG difference...or it sure does for me....little to not enough sleep creates more pain for me...and more pain is definitely something that none of us need.

My last tip is to be sure and ask your doctor to check your Vitamin D level....which is so very important for a lot of people these days...low Vitamin D can cause some of us to have additional pain...(it did for me) and it can also affect other illnesses as well...according to the medical researchers...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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1975transplant replied to dollbug's response:
Thank you Fibro friends,
Yes, I do sleep with a 3 inch memory foam on top of the mattress. Also, we have an adjustable bed, so I can crank it to any position that is comfortable that night, from sitting to flat, and all positions in between.
I take medication for low thyroid.
I also take 5000 IU of vitamin D daily which my doctor tests with blood work to be sure it remains the right level for me.
So sleep is still the main issue, I think. (Maybe use more Gabapentin? -although it doesn't make me sleepy.)
I was using Hydroco/apap to sleep, but it made me groggy in the mornings. So I discontinued it. I decided I'd rather have pain in the morning and at least be wide awake. I may change my mind on that if pain at night keeps me awake but I can usually sleep, even if it isn't deep sleep.
 
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dollbug replied to 1975transplant's response:
Hello again...I know when I was trying to find something to help me sleep....I found that taking a hot shower at night using lavender bath salts in a stopped up drain helped my body to relax so that I could sleep better...and IF you are unable to take the shower....you can also just soak your feet for a bit in it...

I have also found that keeping a schedule on going to bed and getting up each morning also helps...

I have to sleep in a recliner...on pillows is actually the only way I can sleep without causing additional pain to my body...I also have found using a heating pad on places which refuse to stop aching also help...

Just thought I would share this also...did not know what all you have tried...

Take care and good luck..


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..


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