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CindyLG posted:
Hi. Haven't been on here in a while. I was wondering if there was anything news worthy reported in the wonderful world of Fibromyalgia. Hoping for something that will actually help with the fatigue and pain.
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CindyLG responded:
No? Well, that's not very encouraging....Lol. Guess it is what it is....will keep dealing with it. Like there is a choice right! BAHAHAHA Have as great a day as possible. Cheers

Take Care & Rock On,
Cindy AKA CinBad
 
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dollbug responded:
Hello Cindy....MiMi in NC....glad that you posted. I am not sure exactly what you expect to be reported in the world of FM....(notice I did not call it wonderful)...I do not know what you have tried so far but there are all kinds of *tools* that might help you cope better. I think we, FMers, are always looking for a *cure*....but I do not think that it will be found during my lifetime. (I am now 60)....but I am sure that there will be improvements made as research is being done.

I have read that there are *millions of us FMers* now who suffer from the mean and ugly illness....so I am sure that research will indeed continue. I think it is good that more and more doctors are at least now learning that FM is a real illness....instead of trying to tell us that it is all in our heads...(although most of us already know it has something to do with our brains anyway and our central nervous system).

So I have to ask you....have you found anything at all that has helped you? Have you tried any of the *medicines* to help ease your pain? Have you tried any vitamins and supplements?

A lot of our members join and then just disappear....I often wonder what happens to them. It is good when an old member returns and at least tells us that they were here earlier and have not been here in a while. It is always good to hear from these people.

I hope things are going well with you and that you will share more of what you have found to help you cope better, if indeed you are.

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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CindyLG replied to dollbug's response:
LOL...yes, I did notice you did not add the word, wonderful. I've tried pretty much everything. Lunesta helps a little for sleep and Adderall helps a little for fatigue. I still get up every day feeling tired and in pain.

Have been taking vitamin D for a while now. I saw you campaign for that a few years ago...at least I think it was you. You know, the whole Fibromyalgia and memory loss thing and all...LOL

I can't speak for anyone else, but I only make an occasional appearance on here for 2 reasons: 1.) I have pretty much given up hope. 2.) People can get a little vicious on here if you type or do something they don't like...like going off topic.....LOL

Thank you for responding MiMi. Take care & rock on.

Cindy AKA CinBad
 
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dollbug replied to CindyLG's response:
Hello again Cindy....you should NEVER give up on hope...since for some of us this is all we have....we FMers must keep on keeping on....until we find the right combination of tools and tips that will help us cope better....and you are so right....sleep is so very important to us FMers as well. I know that when I first got sick I was sleeping very little....mostly tossing and turning....it became a vicious cycle.....I even participated in one of the sleep studies which was offered in a medical teaching hospital close to where I live. I was monitored with a computer which looked like a watch and I also had to keep a log on my activity (sleeping, resting, waking hours)....it was quite interesting as I would go in with my log book and then they would download the computer and it was interesting to just how close my log was to what the computer indicated.

I was also taking a placebo as well....(which at the time I did not know for sure - but I was able to comment on whether or not I thought it was the medicine or the placebo....I guess right....they told me long after I had finished the study since I had indicated that I would like to know.

OK....yes....you are correct....it was me who sounds off about Vitamin D....I have been on a mission now for a very long time about it. I think Dr. P was actually unaware of just how important Vitamin D is to us FMers....he is no longer here but his *posts* are still with us....you might want to review some of them. He was a wonderful *asset* to our community.

I am one of the FMers here who also has the chronic fatigue and I have not been able to find anything which has improved this as well. There are some days which are better than others and I can NOT pinpoint as for the reason of this. I continue to try different things though that I come across on the internet....hopefully one day I will find something that will help this.

Don't know how long you have been taking Vitamin D....or IF you have researched it any...don't know just how much your level was but it took me a very long time to get my level back up to within the normal range....it was well over a year....and my level was still in the low range.

Sorry that you had a *bad experience here*....but the website is for all of us to learn from one another. There are a lot of new people here....and a lot of people come and go....but I hope you will feel free to post when you want to. There is someone here most of the time....24/7....and we do understand just what you are dealing with.


Take care.


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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CindyLG replied to dollbug's response:
Thank you so much. I will try to find the hope again some day but 20 years of this has whooped the crap outta me....LOL I decided at one point that I just wasn't gonna have Fibromyalgia any more....don't have to tell you how that worked out for me BAHAHAHA.

I thought you were the Vitamin D advocate. If I remember correctly I recently saw on the news that it was stated that Vitamin D was recently shown to not be a valuable supplement to take after all ....Personally, I am going to continue taking it because I don't think it could possibly hurt although my Vitamin D levels are okay. I also take Mega Red Fish Oil and an aspirin every day.

Some find it strange that I complain more about the fatigue than the pain. I am glad others understand about the fatigue.

I continue to have a high sed-rate. But I do have osteoarthritis, a uterine fibroid tumor and a tumor in my femur....all noncancerous. Just curious, do you have any of these things as well? If I remember correctly you have a little more than Fibromyalgia going on as well.

As for as the bad experience on here....live and learn right. It's all good. Thank you for all of your kind words.
 
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dollbug replied to CindyLG's response:
Hello Cindyl.G....Yes....I can relate to you deciding you were not going to have FM any more. I think I did this in the beginning....thinking that IF I just ignored it...it would disappear....I think we all know this does NOT work. But at least we now know....right?

I am dealing with other health issues as well. I have had 4 right knee surgeries....(due to an injury in the 80's) 7 hand surgeries....parathyroid surgery, right elbow surgery and cervical (neck) surgery as well. I do take a joint supplement which helps my knees. I have also had the synvisc injections in my knees as well. I have had injections in both hips as well.

I do want to tell you that after I had a hysterectomy my pain levels got better for a while....(this was before I met the wrath of the dragon, aka FM).

I also take Omegas as well. I know that they have helped me. In fact, I depend upon the vitamins and supplements every day. I know that I am now better off taking them than I was before I started. I have also learned through all of this that vitamin and supplements are just like medicines...they are NOT ALL THE SAME....so if you think what you are taking perhaps you need to switch brands and find out if another brand will work better for you. I learned this by experimenting with different brands.

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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franr responded:
Dear Cindi
I had a terrible winter. I didnot sleep for 8 weeks and the pain came increasing worse.I was in and out of the ER will dehydration finally I switch hospitals and MD's.They placed me on Remeron for sleep and pain and it worked.I also saw a pain specialist and was put on Gralise (long acting Neurotin) and I am 90% pain free so don't give up hope .Hoefully this will last and I am back to doing normal things.Out there is a MD who will help. Gentle Hugs. Fran
 
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CindyLG replied to dollbug's response:
Thank you! I appreciate all of your help and knowledge. You're the best!!
 
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CindyLG replied to franr's response:
OMGoodness! That is encouraging!! Well, I thought I had tried most everything but I admit I have not tried Remeron or Gralise ( did take Neurton years ago...)

I am sorry you had such a difficult winter. I am so happy and excited for you concerning the relief you are getting now!!!!! Believe me, I will be asking my doctor about these medications! It's definitely worth a try!

Thank you so much for responding and giving me this information. I sincerely appreciate you're kind words of encouragement!

Take Care & Rock On,
Cindy AKA CinBad
 
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fibroinsd responded:
I just wanted to add that Cymbalta helped me for quite awhile...not sure why your doc didn't go there or to Lyrica or Savelle...and there are other meds too...Right now I am using a muscle relaxant..flexeril...to help with sleep..hmmmm..seems like you need to have a talk with the doc on why he/she picked these meds..and not others..??

You might go back into the section on tips or resources and look for the member post...called member toolbox...started by Nancy B...and see if anything is helpful there..also...there is one there somewhere by Amy.(I think she called hereself Meme) that was a good resource on different meds..

hope that is helpful..
cece
Let's put the fun back in dysfunctional !- Mary Englebright


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