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Just_a_Scots posted:
Hello,

I don't post much to this group, but try to follow the posts.

I was just curious if anyone else has run into a problem where no medications work?

My last visit to my rhuematologist was silly. I told him how bad I was feeling and that I really didn't want to go on disability. I told him that if he had any suggestions I would take them.

His big, bright idea was to give me medicine to help me sleep better (?). It took about 2 weeks for me to have a bad reaction to that medicine, so I had to stop.

Then I went to my sleep doctor (I have apnea), and his big bright idea was to give me something to help me wake up during the day. He gave me nuvigil (provigil's cousin, I guess). It took 3 weeks to get the insurance to approve, and with taking just one pill, I thought I was going to have a stroke or heart attack. Needless to say I didn't take a second pill.

I have been on Cymbalta (horrible medicine for me), Lyrica, Wellbrutrin, Flexeril, and about 100 other antidepressants and the like. All of which either did nothing, or the side effects were so bad that I had to stop taking them or become disabled just from the medication.

Most of the medicines that i have a reaction to, I have an opposite reaction, it is supposed to make you sleepy so it keeps me awake.

I am now to the point that the doctors are telling me that there is nothing else they can help me with. I have suffered for 16 years, even though it took them 5 years to diagnose me (being a male in his 20s at the time didn't help).

Has anyone else gotten to this point?

Thanks!
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booch007 responded:
Good morning,

I think this is such a difficult time in our lives, to find what works and what really makes us feel like we are going to die. (Cymbalta did that to me).

I started with alot of non medical fixes and then moved up the chain. Motrin and I are still best friends. I then added just a Soma (muscle relaxant) at night. It knocked me out for a while now it is just a helper to aid my sleep and stiffness on arrising.

I changed my eating and I only drink water now, to hydrate my muscles and body is so important to me.

I started tramadol late in this....and I still only use 37.5mg most of the time. I never look for pain free, just enough to get me moving into disraction to have a day.

I have a good relationship with my pharmacist as well to be sure I am not having any drug interactions.

I speak so often of the book FM and chronic myofascial pain , a survival manual.....by Dr Devin Starlanyl. I just find it so full of help and ideas to get better.

I hope with the resources on this page and the things available on amazon.com including Dr P's books you can empower yourself to figure this out better.

No magic pill is going to be painfree for us, but better is in there somewhere. Don't let any doc start you at the "normal" dose...start small and move slowly up to the dose right for you.

Avg dose of Savella is 50mg twice a day....I can only tolerate 12.5mg a DAY! That is me. I was loaded with side effects and I just said....nope 12.5mg thank you.

Journal your issues and fixes and meds and when and how you feel.....it gives perspective down the line to see* what is working and not.

Good luck, I wish I had a magic pill for you and a quick fix answer but this issue we deal with is a toughy, we are all different and challenging at best for the doctors.

(((soft hugs))) Nancy B
 
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fibrofran17 responded:
Just a scots, So sorry for your predicament, I share it. EVERY and I mean Every med ever prescribed to me disagreed with me, I felt like I was dying at least 6 times in the past years trying out meds. I have learned that I Must start very very low dose, no matter what the doc prescribes, period. I agree with Nancy, I took savella, and almost lost my mind, but if I took 12.5 it actually worked well. Do put me on gabapentin a month ago, 300mgs 3 times a day, the next day I had tremors , shakes, vomiting, unbearable dizziness, migraines etc etc, double vision...scared me so. I spoke to the pharmacist for quite awhile before I started it, he gave me the typical side effects the pharmaceutical companies list. But WE are not One Size fits ALL. I went back to hime after a week from hell after taking it and he said the doc should have tapered me up! He saw the starting amount but didn't say a word. Anyway, you have to stay in tune to everything you put into your body. Some of the meds you went through might actually work for you at a much lower dose. Like Nancy, my miracle is tramadol 12.5 (non time released, I break them up, every 6 hours or so. It takes away enough pain to be me and move around and do things. I tried 50 mg as prescribed and went out of my mind! (and the Powers that be are now worried we are drug seekers!!) I find if I can keep the pain down I am a different human being...I cope with the rest. I also take a very low dose 10mgs of celexa, really helps. God Bless, stay positive no matter how hard it may be, you will find your way into the Light of day. Let us know how you're doing, we care!! fibrofran
 
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dollbug responded:
Hello and welcome...MiMi in NC...and I am one of the FMers here who tried several different medicines along the way....found that none of them helped me enough without causing side effects...and what FMers need just one more *issue* to deal with....I ended in doing my own research and actually found that by doing a trial and error process...I found vitamins and supplements which helped me cope better, plus other things as well...

And as someone else stated below....ONE SIZE DOES NOT FIT ALL...even this is true with vitamins and supplements...as with the Vitamin D.....there is what is considered a *normal range*...and it is a WIDE range....so while a low range might work for one person...it might take a high normal range to help someone else...I have also learned that I have to tweak the vitamins and supplements at times...I call this *tricking the brain* into thinking I have changed the normal...so there are all sorts of *tools* that a person can do...that might make a difference...but only you will know when you have found what works for you.

I take the following....Fibro Response OR magnesium malate..(either or but not both-sometimes I switch - which I have found works-this is one that I can tweak)...Omegas, Super B Complex, Calcium and Vitamin D...(I don't take the Vitamin D daily - but I do get some each day in the multi vitamin)....I also take other vitamins and supplements too since I have other health issues....but these are the ones which help my FM pain...I am NOT painfree...but I can manage...and by the way...I DO NOT take the dosage on some of the bottles-as I found some to be way too much..so again I agree...less to start with...

I do not think we FMers will ever be completely free of pain and I do not expect to ever have my *normal* life back again...(the life I had before I got FM)...but as long as I can *control my pain somewhat*....I have learned how to cope...now IF only I could find something to help the chronic fatigue....

As you probably already know....this group does not have too many men who post....but of course Dr. P is here and he deals with FM each and every day as well...

I would like to suggest that you ask your doctor to check your Vitamin D level...which is important to a lot of people these days...low Vitamin D can cause additional pain for some of us..

Remember we FMers have to keep on keeping on....

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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kgunn1282 responded:
Hi there, I actually gave up on meds because I couldn't find any that seemed to help with the pain. I recently saw a rheumatologist and he started me on Elavil. I was suffering with knee pain for six months with no relief and no explanation for the pain (chalk it up to FM like everything else). I can now say I am 90% pain free with the Elavil. It does cause me to have dry mouth but I use that as a positive so Icahn drink more water. Hope you can find relief soon.
 
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annette030 responded:
No, not yet anyway. I have tried many antidepressants and gave up on all of them, my doctor does not even try them anymore.

I take gabapentin once a day in the evening, and zolpidem to help with sleep. Opioids for the pain. That is what I have taken for the last decade or so. I have found that sleeping well really lessens my pain, that may have been what your doctor was thinking way back when. When my zolpidem didn't work while my son was deployed, I did try different sleep aids, but ended up going back to the zolpidem at a slightly higher dose.

If you have really tried them all and drugs do not work for you, then I would go to non-drug treatments. CBT is a wonder treatment as far as I am concerned, it helps as much as any drug I have ever tried.

Best of luck to you.

Take care, Annette


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