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Can Fibro disappear
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lionbaby73 posted:
In 2006 I was Dx'd with fibromyalgia. I was so ill, the pain was unbearable. I could barely walk or move my hands & gained a lot of weight from being sedentary all the time. I went from a fit, very active woman, to a person I didn't want to be! It was just awful. This lasted for a few years before I got better with meds and therapy. In 2009 I was retested and I was still positive...Well I have never stopped hurting but I learned to live with it. A few months ago I went to my doc with really bad pain since I wasn't taking the meds anymore because they were not covered by my insurance and I couldn't afford $700 a month for them..I have inflammation on my neck, my hands get stiff, I cant hold on to things for too long and the list goes on...well they tested me again and I was told that I show no signs of any autoimmune diseases or conditions so the doctor decided not to send me to the Rheumy. Could it be possible that the fibro is completely gone? and if it is, what can be causing these symptoms?
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dollbug responded:
Hello lionbaby and welcome....MiMi in NC....IF you were *tested* for FM....someone somewhere told you a *story*....there is NO TEST which actually indicates you have FM....the doctors do use the *pressure points* to decide if indeed they are *tender to touch*. I was told that once a person has FM that you have to learn to cope with it the best you can....there is NO CURE for it. I will say this though that medical research tells us that there is no inflammation associated with FM but I think that there is....but I am only basing this on my own personal experience.

Taking $700 in medicine each month is a lot. So what kinds of medicines were you taking? So if I am understanding your post you are still having problems but there are no signs of any conditions, is this correct?

I do hope that you will try to find a good doctor who treats FM. I would also encourage you to be sure and get your Vitamin D level checked when you see your doctor.

I hope you will also check out the info here under *tips* and *resources* and be sure and review the *member toolbox*....I am sure you will find some good *tools* that you might find will help you cope better.

Take care.



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

 
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missist replied to dollbug's response:
Just some basics on fibromyalgia--as they know it now-- if there is more research it might change.

1. it is not an auto immune disorder--however a rheumatoligist should know how to treat it. That is the proper Dr at this time for fibro.

2. It is not believed to ever be cured/go away. However some people have full or partial remissions.

It sounds to me like you have a communication problem with your doctor--is it possible he is looking for signs of rheumatoid arthritis or lupus and Not fibromyalgia?

I will agree with what Mimi said also-- there is supposedly not inflammation with fibromyalgia--but I have it too--and do get it especially in my back of neck/shoulder area. It does not show up on blood work however.

I cannot imagine what you were being treated for that cost $700 a month-- not fibromyalgia I think--cuz it should not cost that much at all.

Fibromyalgia has a lot of 'co-existing' problems. You might need meds for allergy, for asthma, for pain, for nerves, for various symptoms.

With insurance my most expensive meds are Advair and Celebrex. Which neither is really 'for fibromyalgia' but they sure help me.

I think the best thing You can do is make sure fibromyalgia was your diagnosis to begin with and then if it is research it well because it sounds like your doctor has no clue.

Usually they have 'some idea' of what it is, but you seem to have one that is even less informed than most.

Hang around here and ask more questions-- It will help you a lot I think- as you can learn what is really going on if you do have fibromyalgia.

God Bless-- praying for you, Mary
 
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missist replied to missist's response:
Oh... the usual starting point for meds for fibro are:

something that works on nerves-
-some use Lyrica (expensive) I use gabapentin about $2. a month at Walgreens.

Something that boosts seratonin--
usually a tricyclic anti depressive. Amitryptilene is a good one, i use nortryptiline--& it seems to work better for me

something for actual pain
I use an Nsaid-- celebrex. Over the counter nsaids help too--but not everyone. I think for me, and likely for you too-- it is helpful cuz you may have some osteo arthritis that is made more painful by fibromyalgia.

Muscle relaxant--
the one I hear of the most is flexeril. I don't use that so dont' know what it costs.

That's usually the 'starter kit' for fibro. Over time you adjust meds, vitamins and lifestyle & maybe will use something for other fibro related problems, or find one drug works better for you than others.

hope that's a little helpful. Mary
 
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bette_kaffitz responded:
Lionbaby,

Hi, and welcome to the group. About the cost of meds, it all depends on what you need. Most docs are willing to start out with the older ones that are generic--especially if you explain that you cannot afford the more recent ones that are still under patent.

There are good medical reasons to stay on the older drugs if they will manage your condition. Drugs that have been around awhile have been tested by thousands of patients--not just the few who participate in drug trials. Any problems with the drug are known, and you can be forewarned what to watch out for. Newer drugs can be lifesavers (or, for us, they can make the difference between too much pain and only the amount of pain you can bear), but they cost a lot more.

It takes 7 years to find a chemical compound, make enough to test on animals, do the animal testing, set up and do human testing (again making enough of the drug to supply the testing) and then do an even larger testing of the drug so you can try for FDA approval. This costs BIG bucks. Naturally, the company has to make some big bucks from the drug, or it won't have the money to develop the next new drug. Almost all the money the original manufacturer earns comes BEFORE the patent runs out and the drug goes generic.

Work with your doctor. There are ways to manage fibro. You probably won't be pain-free, but you probably will be much better than you are now.

Bette
 
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franr responded:
Hi Lion Baby
I believe fibro never goes away.It can go on a long term remission .But sometimes when we least expect it or anyting out of the ordinary affects us we can go into exacerbation causing symptoms to reflare.Is it possible for you to receive samples of medications from your MD to help lower the costs.700 a month is way too much for you to be paying.Are your meds brand names or can they give you generic.I take Grailse which cost 118 a month and my insurance pays 68 towards it. And I pick up the rest,Maybe you can order meds from Cannada. But check with your MD first.Hope you hook upwith the right MD and let us know how you are doing....Fran
 
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lionbaby73 replied to dollbug's response:
Hello MiMi,
Initially they did a blood test to check for any autoimmune diseases, It was positive so they sent me to the Rheumy who did the pressure point test and other stuff and dx'd me with Fibromyalgia. I was taking Lyrica ($380) and some anti-inflammatory, muscle relaxers, pain killers & sleep aids the Rheumy prescribed. It took me 3 years to get better, or "learn to live with it." But the pain hasn't gone away. Now I have stiffness an have lost of feeling in my hands and a couple of other symptoms so I went to my Doc the test they did was the same blood test looking for autoimmune disease or inflammation and they said it's negative therefore I have no FM. Regarding the Vitamin D, it's low so the Doc rx'd me some. I KNOW the Doc is wrong. I know my body and I know this pain and other symptoms I'm having. I need to see a Rheumy and get back into treatment. Thank you for your time. Have a great day!
 
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lionbaby73 replied to missist's response:
Hey Mary
This Doctor is new and she has no clue of my past just what I tell her. I posted above about the meds I was taking and I know it sounds crazy but yes the price for everything was a bit over $700, the Lyrica alone was over $350/mo. and like you mentioned I had to take multiple stuff, like sleep aids, anti depressants, anti-inflammatories, muscle relaxers, and other stuff. I know the FM is not gone. The pain, the inflammation on my shoulders and neck is ridiculous..everything is the same as before. I KNOW what I'm talking about, I just need this Doc to really listen to me.
 
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lionbaby73 replied to missist's response:
Hello,
LOL, That's about the same stuff they had prescribed me...I just need them to referred me back to a Rheumy.
 
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missist replied to lionbaby73's response:
Hi.. you're right she has no clue. Oh dear. Instead of lyrica-- you can try gabapentin-- its a generic neurontin. $2 a month I pay for it at Walgreens if I get 2 mos at a time. Not sure, it might also be discounted withe balance card? Anyhow it is cheap. There's a generic aleeve over the counter that is fairly cheap. Then older tricyclics much less than new things like cymbalta.

You need to maybe find a basic definition of fibromyalgia online and copy it off and hand it to your dr and tell her that fibromyalgia is NOT an autoimmune illness and that you were diagnosed properly by a rheumatologist and must be treated for pain or it will become worse. If she won't do it-- find a doctor who is more respectful of the people who pay her.

Its hard, I know. I have a hard time with doctors too. So many of them believe that if you just work out and eat right you'll be fine. The new 'health' mantra. Its not true. Chronic pain is real and must be treated. God Bless and I hope you get some help. Mary
 
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lionbaby73 replied to missist's response:
Good Morning, I told her to send me to one but she said that since I have multiple medical conditions that we were going to take it one at a time. Starting with the Hypertension which was out of control. the other day I carried a couple of bags for a few minutes and I couldn't move my arms the pain has gotten really bad.the back of my neck is inflamed. Im going to have to inform her of what FM is. Thank you Mary
 
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bette_kaffitz replied to lionbaby73's response:
Lionbaby,

You are going through a right-of-passage. Getting a diagnosis took me me 20 years, and it is a common problem. I really hoped that after the 1990 American College of Rheumatology guidelines came out things would be better. Unfortunately, this hasn't happened.

On the other hand, there is no definitive treatment for fibro. If you read a few posts, you will find we are all on slightly different regimens. Either a drug doesn't work for you, or it has side effects that you cannot tolerate.

At the same time, most of us--like you--have other conditions that can be treated. Your hypertension is a big one. Hey, this can kill you! Many of us have osteo- or rheumatoid arthritis. Some have lyme disease or lupus or thyroid problems. All of these can be treated. Once these other diseases are being managed, you and your doctor can work on finding ways to lessen your fibro symptoms.

The good news is that many of the meds used to treat those other illnesses can also help with fibro. Give them--and your doc--a chance.

(Here's a similar example: My SIL in NJ lost her power during hurricane Sandy. Much of the state needed the electric crews to come out. Where did they go first? Where it wasn't flooded. Where the roads were passable. Why? They spent the first days helping those they could get to at once. Later, they were get to the harder-hit communities as roadways were cleared, emergency medical crews finished up their work, and the waters receded. By fixing what they could get to easily FIRST, the crews were able to concentrate on the harder to fix areas once they were accessible. The same holds true for treating your fibro. It's a long term project and is best handled with all the easier, complicating factors taken care of first.

Try to be patient. I think patience is the most important part of managing fibro. Without it you'll be chasing after quick fixes that aren't there. You'll be creating stress. You'll be missing out on life while you look for a "miracle cure."

And there is none.

Bette


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