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Fibromyalgia: Disease Progression
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newgrandma1953 posted:
Hi Dr. P,
I have had this disease for 3 years. I always had pain in my legs and feet primarily, then both arms and hands, to my back, head and neck and face. I am currently taking oxycodone10 mgm every 4 hours along with cymbalta. The pain continues to increase. I do have a high pain thresh hold, so I think. I am very limited physically with regards to walking especially. My question is how far can this disease progress. I just wonder how much worse it can go? The paIn in my lower extremities and greatly increased faster than the rate of increase in the rest of my body. But all the pain is increasing. I have water therapy twice a week and force myself to keep active.
thank you and God Bless,
Carol
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1wareaglefan responded:
Hey, Newgrandma.... I'm a new grandma, too....well actually she'll be one year old this week!! I've been diagnosed for almost 4 years, and my worst places have become my legs and feet. You're right...it's so difficult to walk or do much of anything when your feet hurt.

The doctors say it's not progressive, but I think by that they mean it doesn't do harm to your organs. But for me, my pain has certainly gotten worse over the few years I've been dx. I think many here have expressed the same thing...that they're hurting more. But there are others who seem to be doing very well, so we're all different.

I'm sure others will be along to answer your question.

Take care....ELizabeth
 
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dollbug responded:
Hello Carol and welcome....MiMi in NC....isn't it great being a grandmother? I have 3 grandchildren...but only get to see 2 of them....(long story)

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....which seems to be an issue for a lot of people these days....low Vitamin D can cause additional pain...(it did for me)....and it can also affect other illnesses as well..(according to the medical researchers)...

I am one of the FMers here who has learned how to "control my FM pain by taking vitamins and supplements and doing other things as well"....
In the beginning when I first got sick....I have multiple health issues....I did try several different medicines but did not find anything which really helped me enough without causing other side effects....(I did not need anything else to deal with)....I take the following...magnesium malate, (or Fibro Response)
Super B Complex, Vitamin D, Omegas, Calcium plus others...as I do have other health issues...but these are the ones which help my FM pain...

So...I did my own research and I did a trial and error process and figured out just what my body needed....it took a long time for me to do this...but I finally figured it out....for the most part....I can now control the FM pain...but the chronic fatigue is another story....

I also use a heating pad when needed....stopain spray (walmart) as needed....taking a hot shower at night using lavender bath salts to help relax my body so that I can sleep better...(sleep is so very important)...do gentle stretches and exercises...(gentle is the key word here)...and watch what I eat...and drink plenty of water...I try to keep my stress level low (which I do have major issues with)....and I have learned how to pace, pace and pace anything and everything I do...(this is a must for me)...

Now I do sleep in a recliner....and have done so since 2005...(not by choice though)...This does make a BIG difference in my spine pain...and overall pain as well..

This is what I try to do ....in a nutshell....and it has definitely helped me....you should also know though that we are all different...and what helps one may or may not help you...only you will know when you have found the right thing or combination of things which can help you....

It is a challenge to do this...but we FMers...must keep on keeping on....until we find what we need...

Learn all you can about FM.....you will find some good info under "tips" and "resources" to the right of this page....and also under Dr. P and Dr. Margaret's name (see the top right hand corner-just click on their name to see their discussions)....

We are a unique FM support group....and I am sure you will feel right at home here soon...

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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dollbug responded:
Carol....I forgot one thing....having a positive attitude also helps....and I am really not sure that anyone knows just how much worse it can go for us FMers....I am not sure that there is one answer to this question....I am sure that a lot of "things" would have to be factored into this and I am sure that no two people would be exactly alike....perhaps the answer to this might be that whatever we want to put into it....I do know that some things....a person only gets whatever they want to out of something...so IF we decide to put a lot into this illness...perhaps we can get a lot or a little out of it...just depending which way one wants to look at it...

Again....I do want to say that we, FMers, just keep on keeping on.....in search of whatever we might find to help us cope better...if we never try things....then we might never know if it can help us...

Good luck with whatever you decide to try....


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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newgrandma1953 replied to 1wareaglefan's response:
Hi Elizabeth, thank you for your reply. Congratulations on your new grandbaby. I'm starting to feel the reality that I need to accept and move on. It certainly is a challenge. I try so very hard to maintain a positive attitude, and certainly I greatly depend on Jesus. But I have to tell you It's a huge challenge because I'm sure like most of the folks here it's tough to lay low when what you really want to do is go go go! It would help if I knew just how bad this is going to get. One thing my MD told me is that I won't loose the use of my legs which was a major concern. However now I need to get this pain under control. Thank you so very much all of you for listening tonight I really needed to vent. Take care Elizabeth and my love and prayers to everyone,
 
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newgrandma1953 replied to dollbug's response:
Hi MiMi, thank you so much for your reply. You have many great suggestions which I will start to utilize right away. Pacing myself has been forced on me. I pushed myself too hard last week and oh my God..I learned the hard way. I am going to start to research the vitamins you mentioned. No one will do it for me so I'm going to get right on it. thank you so very much. God bless you and everyone here!
 
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Mark Pellegrino, MD responded:
Hi Carol,

Sorry you have this disease. You've gotten some great responses. I use my "1/3 rule" as a rule of thumb when talking about fibro and prognosis. This means over time, 1/3 of the people with a diagnosis of fibro will stay the same, 1/3 will report feeling better, and 1/3 will feel they get worse.

You may find this previous discussion informative.
http://forums.webmd.com/3/fibromyalgia-exchange/forum/16611

Good luck with decreasing the pain, or at least preventing it from getting worse.

Dr. P


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