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New To Community and FIBRO :(
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JCurnow posted:
I feel like Im dying everyday and that it must be something lethal. My doc diagnosed me with fibro 3 months ago and I have pretty much every symptom.
Does anybody else have:

-hard time gripping things with your hands and numbness

-numbness in legs and feet

-elbow, shoulder pain

-morning stiffness so severe I have to crawl downstairs

-back pain that seems like its starting to spread around my body

etc ETC ETC...
Also what medications is everyone on?
What seems to work?
Reply
 
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gray1269 responded:
I was diagnosed a year ago and I feel the same way everyday. Consistent pain, no sleep, always tired, depressed my left side drives me crazy! I also have sarcodosis which can cause fibo I have suffered with sarcodosis for over 20 years. I was on lyrica which made me gain weight, emotional out bursts and feeling in a fog. I stopped taking that and am now on robaxsin, lorcet, and aleve. Nothing seems to work for the pain I am so frustrated and depressed. I had to stop working last July as a school principal I know how important it is to be a reliable dependable employee, I am no longer that person. For the first time in 30 years I was not preparing for the opening of school this fall. I cry everyday because I am no longer the active, happy, involved, dependable person. This is the worst feeling ever. I just dont feel like a person of value I dont have the energy to do anything anymore. Scary huh? I was approved in December for disability. I hope you can find some relief Im still tryin. Web Md has been a blessing, especially trying to explain to family and friends about this condition. If anyone has any suggestions please share. Good Luck and many blessings to you and your family.
 
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xperky responded:
Hi JCurnow,

I'm new to this too! dx'd 2 months ago, with numerous symptoms over the last couple years. Yes, my right foot gets a curious combo of numbness and pain at the same time. My legs, hips, back, shoulders, elbows, hands, knees, head, neck, you name it, get pains. I'd say the stiffness is my most common symptom. I've come close to crawling down the stairs in the morning, but mostly I just go real slow and hold on to the railing for life! I get even more stiff in the evenings, do you? It sounds like your back pain is doing the radiating thing - not fun. A few months ago, I got a new android phone after I dropped my old hand-me-down and cracked it. LOL. So, I think we have some things in common.

Personally, I find tramadol to help a lot with the pain, when needed. Carisoprodol (Soma) helps relax stiff muscles. I just started a very low dose of a tri-cyclic antidepressant in the evenings, and will give that time to see if it will help.

Mostly, pacing yourself will be very helpful. Others here will tell you about vitamins to consider taking, and all kinds of useful ideas for coping.

Glad to meet you, even though it's because of our new dx's.

Margaret
 
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fibrosux responded:
I'm sorry to hear that you've joined the club, but happy you found the club. Just reading posts and finding that everyone suffers in the most insufferable manner along with me is somehow comforting.

After some trial and error I am currently taking Lyrica, which I found helpful for my pain and Cymbalta. I take Ibuprofen 800's, Tramodol and Lortab for the pain depending on the degree. I am starting to use cannabis to avoid an overload on my liver and it helps me get a little something accomplished each day.

I have had to go through the stages of grieving with this disease. I, too, am no longer the very productive employee I used to be and had to resign. Now that I am finally in the acceptance stage I am learning to wake up and accept whatever I can do that day. Even if it is just lay in bed with an electric blanket and read a book.

Yoga and massage have helped me immensely. Make sure you find a good therapist that is familiar with FM.

I wish you the best of luck and keep your spirits up as much as possible!!
 
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dollbug responded:
Hello and welcome...to all of the new "faces"...MiMi in NC...sorry that each of you are not quite up to par....but I am so very glad that each of you has found this unique FM support group...no....life will never be the same for you again....sorry...but this is the truth....BUT....there are all sorts of good "tools and tips" that each of you can try.....that just might help you cope better with the wrath of the dragon, aka FM....It is indeed a very mean and ugly illness to deal with....but we FMers must keep on keeping on..until you find what works for you..

It will NOT be an easy task for you....and there are no quick fixes...sorry....as it does take a trial and error process to figure just to figure out what will work for each of you....but there is hope....this process does take time and effort...and unfortunately, since we are all different...sometimes the doctors have a difficult time in trying to figure out how to treat us..

First....I would like to encourage each of you to ask your doctor to check your Vitamin D level....which is so very important for a lot of us FMers...there has been a lot of research in the past few years on this and there are a lot of people who have very low Vitamin D....which can cause additional pain for a lot of us....as well as affect other illnesses too..again..I can not stress how important this might be for you...it is a simple blood test...but you MUST ASK the doctor to check it....as it is not included in the normal bloodwork (YET) that the doctors do.....

Learn all you can about FM....the more you know...the better you will figure out how to out smart "it"....you can start right here....read the info under "tips" and "resources" to the right of this page....be sure and include "member toolbox" and "nutrition and vitamins"...you should also remember though...that what works for one...may or may not work for you....only you will know when you have found something that is helping you cope better....you must allow at least 6-8 weeks though before deciding if what you are doing...it helping you....again....I have to say...there are NO QUICK FIXES...

Each of you will now have to learn a new way of life....pace, pace and pace some more....LISTEN TO YOUR BODY....we FMers tend to feel good and then cross the line...and all of a sudden....we are hurting all over..this is not good for the mind or the body...and does not help our spirit at all either..

Eventually you will figure out how much you can do....and as time goes on...it will get easier and better for you..STOP before you reach this point..so very important...

It also takes us FMers longer to get over anything....colds, coughs, and just the viruses that we are all exposed to...and it seems like we are now much easier to "catch" something too.

I am one of the FMers here....who tried different medicines in the beginning...but was not able to find anything which really helped me without side effects...and I did not need anything else to deal with..

It took me a long time but I finally figured out just what my body needs to cope....and I can now "control my FM pain" for the most part..I take magnesium and malate combination supplement...(found at vitamin stores) Omegas, (I take Fish Oil, Salmon and Krill)...super B complex, Vitamin D. Calcium plus others...but these are the ones which help my FM pain...plus doing other things as well...I do take Prestiq...which controls my emotions....this is the only prescription though that I take every day.

I use the heating pad, when needed....and stopain spray when I can not ease my pain....(found at walmart for around $....I also take hot showers at night using lavender bath salts...which help relax my body....I do sleep in a recliner, with pillows......not by choice though...and have done this for over 5 years now...gentle stretching daily and enough sleep...
limit stress..
In the beginning..I also felt like I had some sort of deadly disease....but I can cope so much better now.

I hope that this will help 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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1wareaglefan responded:
Hello.....I am so sorry to hear of all you new folks out there who've been forced to join "our club." I have pain pretty much everywhere, the worst being neck, upper back, shoulders, and arms. I'm also very stiff, especially in the mornings, and whenever I've been in one position for longer than just a few minutes.

What I'm taking is a super supplemental vitamin, omega 3, calcium, magnesium, super B complex, and vitamin D. I honestly can't say if any of that helps me or not! But I take it, because I hope it will.

The one thing I've definitely found to help is my antidepressant. I say this, because when I tried to quit taking the one I was on (Zoloft), I stopped being able to sleep and had incredible pain. So I switched to prozac.....I immediately began sleeping better, my mood stabilized, and I think it did help some with the pain.

Besides all that, I take lortab....usually 2 a day.....1 first thing in the morning, and another 4-6 hours later. If I'm doing pretty good, I don't need another one at night, but sometimes I do. This doesn't completely take the pain away, but it does take the edge off.

The other thing I rely on heavily is my heated throw! It is so wonderful to wrap it around my aching back, shoulders, and arms. I also rest everyday....my body needs that. I'm able to do that now, because I'm retired. If I were still working, I'm sure I'd be coming home and lying down for a bit.

I hope all of you are able to find the right combo for you. You'll discover much support and understanding here on this site. We care!

God bless all......Elizabeth
 
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dcadl replied to gray1269's response:
know how you feel, I was leading a full life also then I started having trouble walking the last day I worked, I had to crawl up the stairs, thats when I realized there was something was wrong, that was last Oct. i was dignoised with Fibro then but I knew I had it before then I fought as long as I could to lead a " normal life" then I was COPDand now I am on oxygen 24/7 now that sucks, I feel like a huge burden on my husband.
 
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LimaJazmin responded:
Hi, my adivice is stay away from carbs and suggar, you will feel a great difference in one week, you can still enjoy delicious meals and eat butter, mayo and olive oil in all your meals, buy the book: What your doctos may not tell you about Fibromyalgia by Dr. St. Amand. Stay away from Mucinex, I know that it's what he recommends but I've done my research and it puts people through hell. Take a shot of Neurobion 10,000 (Vitamin B1, B6 and B12) swimm in a heated pool or excercise lightly, have accupuncture by an specialist, also take flaxseed softgels (02) per day, drink boiled ginger root all day long this is a natural desinflamant, shoud do wonders, and don't try to do everything in one day, you can do it but it will drain all your energies. You can live a normal life with FM, I do. Best regards and good luck. Miriam


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