Fibromyalgia - Help!?

[gritsar]

Quote:
Maybe I'm misunderstanding here, but medicare won't pay for a DX of fibro.? Yes, they very much will. Been there, done that.

Doctors that don't believe fibro. exists? You mean there's still some of those left in the world?

 

[Nausicaa]

I developed fibromyalgia after my fractured pelvis and knees did not properly heal. I've had all kinds of pain in reaction to touching something cold, low weather temperatures, wind, and various other chronic pain... there will often be tingly sensations. The pain can be oppressive, shooting, and other types. I do develop muscle spasms but the horseback riding also took care of these in a way that the medications did not. If I'm in a vehicle for waay too long though the spasms come back. Fatigue and insomnia is a major aspect of fibromyalgia. I developed arthritis in the fracture sites and very odd incidences of nerve damage.
Granted my case is different from everyone elses, the hospital here still sends me to the fibromyalgia clinic a lot, it can also be something they diagnose you with when they simply do not know otherwise what the pain is from.
What I can say for EVERYONE is that if you have chronic pain, pain associated with possible nerve damage, exercise does help A LOT. I've found this out through trial and error throughout the years. If I go a few weeks without exercise I can simply no longer function, the pain gets so bad, and I have to return to prescription painkillers. In the beginning you may have to try to dedicate some time EVERYDAY to it. I also understand that there may be many exercises that you simply cannot do... but trust me there are many safe, options that won't further aggrivate the pain. My doctors insist that the best exercise aside from walking is swimming. I chose daily horseback riding and it honestly feels like it saved my life. After about the first year of horseback riding I was able to take myself off my prescription painkillers and save them for "as needed" use. However, after moving I've now gone 2 months without being on a horse and I can no longer function without pain, everything hurts again and I'm doing the hunched over walk

So now I have to buy a horse.

OK, to summarise, from my experience:

Sleep, EXERCISE(the exercise MUST be CONSISTANT), and diet.

As far as symptoms, it is as it was said before. Through ruling out other possible causes, you and a good doctor will simply know when it is fibromyalgia... it is pretty bad. Also, the pain will most likely be here to stay. I'm on my 7th year of living with this. With a good horse in my life though I don't even feel like anything is wrong with me.

There is hope

 

[Nausicaa]

Quote:
Maybe I'm misunderstanding here, but medicare won't pay for a DX of fibro.? Yes, they very much will. Been there, done that.

Doctors that don't believe fibro. exists? You mean there's still some of those left in the world?

Yes, doctors still believe it does not exist. Also, it is now often used as a diagnoses when "oops.. we don't know what is wrong with him/her." I've also had co-workers (older men) who do not believe it exists... they have the "it's in your head" mentality.

..





Yeah, no... sorry. It's not a head thing

Actually, research is coming around to support evidence of fibromyalgia sufferers.

 

[sutillman]

I was diagnosed after two years of test, MRI's, you name it. Was finally referred to a rheumologist after seeing 3 other types of specialist. I took me going to the local walkin clinic for another problem and explained what I had been going through. She ordered the correct blood work which confirmed I had rheumotiod arthritis and she referred me. Had begged my primary physican for two years to help me. Anyway, I had a reaction to the Lyrica and ended up in the ER. Was changed to Savilla which is fairly new. It helps alot most days. I still have days where I can hardly go, but it's usually after I have had a good day and overdone it with outside work or something. Bug the hell out of every doctor you can go to. I finally told my primary (after he admitted he really didn't know what was wrong with me) that he didn't know then find me some one who will. He was really sick of me! Get referred no matter what it takes. Call the rheumotologest yourself and ask if they will see you without a referal.

 

[ChickyChickyBaby]

Officially diagnosed in 2002 - symptoms several years before then....so almost 10 years with it here.

Almost everyone has different symptoms other than the pain, I mean. And it varies from day to day, hour to hour.

Best type of doctor is usually a fibro aware Rheumatologist.

The ACR is trying to get new criteria approved. It does not include the main trigger points though. I think it should. And also include the new stuff.

Best informational site out there now, that I know of right off the top of my head .... FM Aware

 

[ChickyChickyBaby]

Quote:
Maybe I'm misunderstanding here, but medicare won't pay for a DX of fibro.? Yes, they very much will. Been there, done that.

Doctors that don't believe fibro. exists? You mean there's still some of those left in the world?

Yes, doctors still believe it does not exist. Also, it is now often used as a diagnoses when "oops.. we don't know what is wrong with him/her." I've also had co-workers (older men) who do not believe it exists... they have the "it's in your head" mentality.

..





Yeah, no... sorry. It's not a head thing

Actually, research is coming around to support evidence of fibromyalgia sufferers.

And someone like me just enforces the belief it is in someone's head.
I am stubborn and hardheaded

AND I did see a rheumatologist back summer of 2009 that did not believe in fibro. Yes, those docs do still exist. First visit was given like 4 different sets (up to 7 pages in each) of questions to answer before the next visit to review test results. Most of the questions were the same in each packet..... do you find you hurt worse when needing attention? When you have a lot to accomplish, do you hurt worse and hope someone will help you get tasks done? ETC ETC . I answered honestly.....NO NO AND NO. No one can do things the way I do them or want them done, so why would I want help when I still will have to do it myself?
Was basically told xrays, scans, etc showed no bone damage (I also have RA) so it must be in my head since my muscles and nerve endings have no reason to hurt.

BTW - Start walking. I walk even on days foot & leg pain is so bad I cannot feel my feet. I said I was hardheaded. Be careful though. That is how I fall often. Like yesterday, fell on the deck. Deck really wanted my chocolate shake

My walking is when I go out to feed the chickens. I do have help if I take them to a show, getting them ready and such.
I started short and 5 mins or less. Now I have chairs placed randomly around where I can stop and rest when needed. Needless to say, just feeding the chickens takes me an hour. Then an hour or so LONGER if/when anyone needs water. Luckily DD does the watering

I never fought to walk around the yard. Dr told me to over and over. No more than 15 mins a day, but no less than 5. Start with 5 and work up slowly.
I have seen so much improvement the past year just from outside with chickens.

AND I am hardheaded enough to be mostly medicine free. I do take OTC when I think I have to. And migraine prescripts. And when it is really bad I cave & get a pain shot. My rhuematologist had me on 9 different meds.

ETA: too stubborn to apply for disability although I seriously need to

ETA2: Pain meds do not help this pain. And with Fibro you will not know a pain free day. You will have days where the pain is so much less, you will be happy to have that day. Then bad days come........

Pain shots have proven to be the best for me. It alleviates the pain & knocks me out so I can sleep through the worst days.

ETA3: Start cushioning your bed. I feel better when I do not wake up in pain every single day.

 

[gryeyes]

My sister, who has now passed on, had it and so do I.

I am taking Celebrex for pain from nerve damage resulting from chemotherapy, and Cymbalta twice a day to augment the Celebrex because it's an anti-depressant that has somatic pain reduction as well. Plus Vitamin D. (Oh, and ropinidrole for RLS, and Protonix for GERD.)

I have good days, okay days, and just awful days.

My Chiropractor performed the testing for Fibro, because I was having really odd reactions to adjustments. Real backlash the two, three days after any adjustment. Mine is primarily upper body involvement (and the lower body stuff is the result of chemo nerve damage, peripheral neuropathy. And some of the hand tingling and numbness.)

The searing muscular pain is the Fibromyalgia.

Chickens are my meditation. Bok, bok, bok.

 

[ChickyChickyBaby]

Chickens are the best

I do take low doses of Prozac daily for chronic pain

( I said mostly med free lol )
and it helps keep me from wanting to inflict pain on everyone around me when it is a bad day


ETA: my neuropathy is due to fibro

 

[mangled]

I get the burning, lancing pain. Mostly up through my shoulders and the back of my neck. Headaches, tingly sensations, and hip pain. Oh, the hip pain.

I've been tested for RA, Lupus, nothing with Crohn's though, as I haven't really had any gastroenterology issues.

I have an extreme loss of focus. She also had me diagnosed with adult onset ADD, but I disagree with this, as it's more of a fog than an inability to focus. I can accomplish my goals, slowly through the day. The pain stops me. I have days where all I can mange is to lounge in bed or sit in the recliner.

At least I can still crochet! It hasn't affected the hands much.

I called a local practitioner today and I'm in the process of changing my PCP. Darn insurance.

If I could get some sleep, I feel like I'd feel a lot better. Sleep eludes me most nights. I'm trying some herbal concoctions through a local certified homeopathic therapist.

I've worked in nursing for almost 20 years. I've had some pretty heavy wear and tear on my body. Add a bad knee and a collarbone and shoulder with arthritis, and it's a bad mix.

Thanks for the input. Especially with the meds.

Blessings-
Em

 

[EweSheep]

Quote:
Maybe I'm misunderstanding here, but medicare won't pay for a DX of fibro.? Yes, they very much will. Been there, done that.

Doctors that don't believe fibro. exists? You mean there's still some of those left in the world?

Yep, there ARE doctors out there that don't believe in fibro.

I love my doctor's, his personality and great bedside manner but his clerk/front desk lady is the pits and never update us on called appointments or cancelled appointments.

Medicare rejected my claim for treatment for fibro. Said I was too young (was 39 at the time), and not enough valid notes to compare with my own doctor.