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Just Diagnosed - advice/experience please =)
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sp2001 posted:
Hello everyone, so happy to find this community!

I was just diagnosed 5 days ago, and am still researching medication and lifestyle changes that can help. I also have Cervical Spinal Stenosis and posted in the back pain community too.

First off, my background: I'm a 33 year old mom of 2, have had neck/shoulder pain since I've been a teenager, but officially diagnosed with CSS from a MRI about 2 years ago (don't know the cause?). I did not know this was the correct term for it until my Dr. appt. and Fibromyalgia diagnosis. I was told at first that it was "narrowing of the spine" and to try the TENS Unit. That's it. However, after trying this once, I gave up, because of pain. (makes sense now!) Tried Celebrex too, but had an allergic reaction. Also have Psoriasis, Hypothyroidism, depression, and lower back pain that is similar to the CSS, just reversed. =P

As far as Fibromyalgia, I'm pretty sure (based on symptoms) that I've had this since about age 18. At that time, I was diagnosed with Chronic Fatigue Syndrome. Now it all makes sense. It took me cataloging my symptoms and pain for the Dr. to make the diagnosis. I am sore and achy everyday. I already know to keep moving, I walk and bike ride even though I end up paying for it.

I'm looking for any advice/experience with this. It's good to know I'm not alone. Thank you so much!
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michmorn responded:
Hi there, I wanted to respond to you. Especially since you were kind enough to respond to my post. I too suffered with neck and shoulder pain from teenage years on. I have lesions, or buldges in my spine. Not stenosis though. I have been blown off by more drs that I could count when I brought in a list of symptoms. I've been to the ER on several ocassions as the pain was that bad. Needed morphine shots. I finally found out about a great rheumatologist in town and was willing to wait months to be able to see her. Finally the fibro diagnosis. Was so thrilled I was not dismissed again like some sort of kook. I take gabapentin. I've tried several other fibro meds and had bad reactions or horrible side effects with all but this one. I'm at the point of taking 1200 mg per day. Apparently that is a low dose. I'm stubborn so haven't increased yet. I suffer many days in pain. Wake up in pain. Especially under my arms, shoulders area. The gabapentin has blunted it a bit I would say. So that is positive. Yes, don't you love how people tell you to keep moving, when sometimes you are in tears and in so much pain? Very frustrating. I am sorry you are suffering. You are not alone and you have many treatment options to choose from. Research meds before taking them too would be my most important advice. This is rough, yes, but it can be made more bearable. Best wishes to you.
 
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dollbug responded:
Hello and welcome......MiMi in NC...I am glad that you have found this unique FM support group...I am sure that you will find some good tools and tips and a lot of good support....this is a great group of FMers....and we are so blessed also to have Dr. P and Dr. Margaret (see the top right hand corner for more info on them and some of the discussions)

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....if you have not already done so...it is just a simple blood test...BUT you MUST ASK the doctor to check it as it is not included in the normal bloodwork that they doctors do....low Vitamin D can cause some of us to have additional pain (it did me) ...and it can also affect other illnesses as well...(according to the medical research)...

I would like to add that the tens unit is a wonderful tool for me....I use it often....right now I am in physical therapy for back problems and they put me on a muscle stimulator....for 20 minutes and this really helps my pain...You need to know exactly where to put it though in order to make it work for you.

I also have chronic fatigue and I have found nothing that will help this....my doctor told me that there is nothing out there that will make it better....

I have found a way to *control my FM pain through vitamins and supplements and doing other things as well...I have tried different medicines but was unable to find anything which really helped me without causing side effects...I did not need another thing to deal with though...I finally did my own research and then did a trial and error process to figure out just what my body needs...I am NOT pain free nor do I expect to be...but I am so much better off than I was when I first got sick.

I take Fibro Response (vitamin store) or Magnesium Malate (vitamin store also)...either or but not both...I also take Super B Complex, Omegas, Calcium, a good multi plus D...plus others...as I do have other health issues...these are the ones which help me the most with my FM pain...

I also use a heating pad when needed, stopain spray (walmart) as needed...take a hot shower at night using lavender bath salts in a stopped up drain right before I go to sleep...(this helps relax my body so that I can sleep better)...

I also drink plenty of water...and I watch what I eat...I do gentle exercises and stretches (GENTLE)...and I try to keep myself on some sort of schedule....I have learned how to pace, pace and pace even more...

I am a mother and a grandmother as well.....and I have had several surgeries as well...7 hand surgeries, cervical (neck) surgery, elbow surgery, parathyroid and knee surgeries...to name a few...and all of these have been since 2005...

I am sorry that you are so young..and having to deal with this mean and ugly illness...bit I am sure that soon you will be feeling better..

Take care and good luck to you....


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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xperky responded:
sp2001 - hello and welcome here! You will find all kinds of new coping methods from the people here.
With Compassion,
Margaret
 
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xperky replied to michmorn's response:
michmorn - those kitties in your avatar look so happy. It's cute.
With Compassion,
Margaret
 
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sp2001 replied to michmorn's response:
Thank you! I had a hard time getting my Dr. to understand about my symptoms too. Over the years, I have gone to 3 different pain management Dr.'s (before FM diagnosis). First one told me I was overweight (just had my daughter at the time) and that if I lost weight, I wouldn't have back pain. Fair enough. I lost weight, got down to 120lbs (I'm 5'2"). Second Dr. said, "You are way too young for back problems, it's probably Sacroiliitis". She gave me a cortisone shot in the bottom of my back. Horribly painful, no relief.


Finally, 3rd Dr. I went to ordered a MRI on my neck area (ignored my complaints about lower back pain). When the results came back, he said "you have narrowing of the spinal canal". He prescribed Celebrex. I stopped taking it and called him because I had an allergic reaction. Next up, TENS Unit. Painful for me, but probably because of the undiagnosed FM.


Sorry to ramble, I could go on & on. LOL I'm still learning about FM, but glad to know I'm not crazy and that this is real. Thanks for your reply!
 
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sp2001 replied to dollbug's response:
Oops, sorry just saw the replies from MiMi & xperky... Thank you!

I found out I was deficient in Vitamin D, B and Folic Acid about 4 years ago through routine blood work. I started taking supplements for these (2,000 IU Vit. D) when I found out. Last year, blood work indicated I was still deficient in Vit. D, so Dr. prescribed 1.25 MG (50,000 IU) for 13 weeks. Then, I went back to taking 2,000 IU. Last week, when he diagnosed FM, he again prescribed the 1.25 MG of Vit. D. This time, I'll be taking it for 26 weeks.

One thing I have already learned about FM is to not "over do it". I would go & go, and then crash. I still have a lot to learn, but I think paying attention to my body & mind will help. Thank you for your advice, it's much appreciated!
 
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dollbug replied to sp2001's response:
Hello again....living and coping with the wrath of the dragon, aka FM....is a *process*....and ti does take time and effort to figure it out....don't worry you will eventually figure out just how much and what you can or can not do...each time you over do...yes...you will pay for this...

MiMi in NC...I did want to say...that you might find it good to keep a journal in the beginning...what you eat and what you do...and what your pain level is...this will give you sort of an idea about what affects you...

There will still be times when you might start out feeling ok...and then all of a sudden a bout of fatigue hits you...just out of the blue....no warning, nothing to prepare you for this..

I still struggle with this...I think we all have good days and then not too good...I have figured out that sometimes how much I sleep depends upon how I feel the next day...whether it is enough of the good sleep that I need.

I want to tell you that it took me a very long time to get my Vitamin D back up to within the *normal range*....so hang in there with this...it made a BIG difference in my pain levels...

I do know that we are all different and what helps one may or may not help you...and you are the only person who can say whether or not something is helping you cope better...

Hang out here with us...again I am sure that soon you will find something that will help you cope better...

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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