fibromyalgia?

Question

i am 41 and have had fibro for 9yrs ive been to doctors done the stretches,therepy,aqua therepy,all of it makes me extremely worse this time i was so bad from therepy they had to put shots in my neck(8) i have been on methadone for 4 yrs now and now they wanna take my dose down i havent ask to up my dosage in all this time its not like they should be leary of my intentions they have seen me in bad shape so why take them away or cut them? i will not get better and its proven to be getting worse. so anyone else have any ideas? i am not out just to seek meds i truely need it. thanks.

Answer 1

I cannot believe how pain is treated in the US. It is a shame that you have to beg to be helped, and then looked upon like you are a drug dealer. Just about everyone with fibro goes through these same hoops. Make sure that your doc checks you out for MS. I have seen some missed diagnoses. The medical community is breaking the law if they refuse to treat this pain you have been having for years. Many lawsuits, class action, are springing up because patients are being left to suffer. Use all of the energy you have to demand treatment. Offer to do a drug test at any time to show that you are in compliance. Contact social services for an advocate to assist you in getting the care you need. The Easter Seals Society and independent living organizations have advocates who can go to the doc's office with you. Safety in numbers. Email me if you need to talk further about this. Have an advocate go to therapy with you to document your pain experience. This is war! Best of luck to you!

Answer 2

Inay -

I am 40 and have had fibro for 17 years. I could not get a diagnosis until 2001, when I read an article about fibro, then found a dr who treated it and went to him with the article.

I do not know why you were on methadone, or why they are changing your dosage now. Another member said that it does not help and is very addictive. I have never been put on it, but I have heard that it is very addictive. Please discuss this with your dr, and consider getting off of this.

I am a massage therapist. I worked and went to school at the same time, and was worried that the stress from it would force me to drop out of school. (As you know, stress is a big factor in fibro) But a wonderful thing happened while I was in school - massage therapy helped my pain so much that I am now off prescription meds (and I had some good ones!). Now I only use Midol or Pamprin when I have a bad day.

I do not think that you need to find a massage therapist who specializes in fibro - face it, students were working on me and how much did they know when we started? Not a lot. You will probably notice that the day after your first massage visit you will be sore the next day. Don't give up!!! Go back. It WILL help. From what I understand, some of the chemicals that our bodies produce are not moving through and out of our systems, so they settle into our muscles. The massage therapy will help move these chemicals out. The first time or two, the chemicals are built up and won't all leave at once, but they will leave and you will be so much better.

Are you near southeast Missouri? I would be happy to give you a severely discounted rate.

Blessed be,

Gypsy

Answer 3

I'm 48 and also have fibromyalgia. Mine got much worse after a car accident almost five years ago. I deal with mine mostly with alternative means such as Reiki, meditation, relaxation techniques, drinking lots of water, and working at getting plenty of rest.

The biggest piece of advise that I can give you is
GET OFF THE METHADONE A.S.A.P.
but don't do it without help. Let the Dr. lower your dose until you can comfortably give it up completely. Methadone does NOT help fibromyalgia one bit. You are addicted to a drug that is doing you no good at all.

Dr.'s prescribe medications way too easily that isn't right for the problem. I know this story very well and have had to deal with the pain of people that I love being destroyed by prescription medications.

I wish you the very best with this.

Answer 4

they may want to change the methadone because of it's adverse effects from years of use. Insist on getting a prescript for something for the pain. As a fellow sufferer I understand. I also am getting worse, even tho most docs will tell you it does not get worse. Great chat line is immunesupport.com. All are nice there. No nasty comments. Shots don't usually help. Anti-inflammatories don't help because there is no inflammation. I wish people understood. We look OK so people think we are not sick. My Rheumie told me to rest and sleep as much as possible and for my husband to not wake me if I am sleeping. I am on SS Dis. Bless you and your aching heart and body.

Answer 5

I am a Neuromuscular Therapist.

Fibromyalgia occurs when the central nervous system is overloaded with stimuli, usually precipitated by a severe physical injury. I am not discounting your pain- I'm sure it's real and life-altering. However, keep in mind that the EXACT symptoms currently labeled as fibromyalgia were labeled as Chronic Fatigue Syndrome in the 1990's and Epstein-Barr Syndrome in the 1980's. Same pain, different label. Fibromyalgia has become the "flavor of the month" for undiagnosed or idiopathic pain patterns and doctors are using it as the
catch-all for anyone with severe or widespread pain. The 18 point pressure/pain test is not much help either. Want some real news? Those 18 points are tender on everyone whether they have fibro or not.

I have had many patients over the years come to me because they were diagnosed as having Fibromyalgia. Guess what? I can honestly say that I don't think any of them had fibromyalgia at all! I say that because after one or only a few treatments their pain was significantly reduced with mild massage (neuromuscular massage, not "fluff" massage) and stretching. That's not supposed to happen with fibromyalgia, is it? What I've found in virtually all of these cases is that the person has experienced one or more serious injuries, most commonly whiplash. So, the patient is getting drugs from their doctor, stretching, aqua or physical therapy, chiropractic adjustments, etc. with little or no pain relief. Want to know why? Because no one is addressing the most common cause of this type of pain: overly tight muscles and other soft tissues damaged by the accident/injuries. I saw a new patient last week, diagnosed with fibro 3 years ago, who's gotten little help from anyone to this point. She's had 5 (yes, 5!) whiplashes. Her neck muscles are so tight that she's completely lost the normal curve in her cervical spine. That not only causes severe neck and back pain but so over-stimulates the central nervous system that it results in widespread pain and dysfunction. The symptoms mimic fibromyalgia but are not a disease at all. To this point NOT ONE doctor has treated, or even noticed, that her injured muscles are the cause of the pain and loss of normal spine function. After only one hour of NMT massage and some light stretching she had better range-of-motion in her neck, reduced overall pain and we identified several trigger points (small, irritable "knots") within the muscles of her neck and back that have been causing her headaches and pain.

I recommend that you seek out a Neuromuscular Therapist in your area. These are highly trained therapists who can identify why you are in pain and relieve it using corrective massage, postural analysis, movement therapy and other techniques. If you've had one or more injuries as I've described above your muscles/soft tissues are most likely very tight. Tight muscles are the cause of the vast majority of pain yet are largely ignored by the medical community. That's why drugs, surgery and any number of other approaches fail- they're not addressing the real cause of the problem. I know this may sound over-simplistic, but I speak from experience when I say that most of the patients I've seen with "fibromyalgia" are suffering from pain and dysfunction caused by injured muscles and an over-stimulated nervous system and realize significant pain reduction by simply relaxing the muscles with NMT, restoring blood flow to the tissues and eliminating the underlying cause of the original pain/injury.

Answer 6

I dont know your answer myself..but here is a website to talk to others with Fibro that may be able to help

http://ibsgroup.org/groupee/forums/a/frm/f/70210261