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Date Joined Apr 2005
Total Posts : 17501
   Posted 1/24/2010 6:15 AM (GMT -7)   
June, I'm starting a new thread for you.  You posted this on a completely different topic...one that I'm deleting all future entries!    I know our members will want to get to know you, so welcome!
Hi all:   I am on my evening prowel , finding information on my   new illness.  Hopped on over from the Hepa*** forum. I have been around  since 2005. After my diagnosis of cryptogenic   liver disease , They told me I had 48 hours to 5 years to live.  Now they say I am more likely to die of arthritis.   I have degenerative disk desiese , ostoarthritis ,  osteopenia, oh  and osteoperosis. Which is why I am here now. They said my liver was doing fine. But my arthritis is getting worse, I had'nt taken more than 3 tylenol in three years. I BELIEVE that is what caused my liver damage I was in so much pain before and still working  I woud take hands full of tylenol ,because if I used a priscription drugs then I COULDN'T drive or do my job . Then after for the past three years I could"nt take any thing, Now I have pretty much been diagnosed with fibromialgia. But the Dr. at the hospital I go to said I should get my pain meds from and RA.and the ones  I'V BEEN to are into holistic medicine, Anyway I'm not going to suffer anymore One Dr. Suggested  ((amitryptyline, it's similar to elavil)) The others LYRICA< SAVELLA  AND  CYBALTA which I have tried and did'nt like the side effects.I'm hoping my regular 'dr will give me something.I am so tired of seeing them.
     So can all you expert s help me out by telling me what you'v tried . I would be so very,very gratfull.

Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 1/24/2010 9:42 AM (GMT -7)   
Hi June and welcome to the family. I was on amitriptyline for anxiety before I was dxd with fibro, it is the samething as elavil. I tried to cut back almost two years ago and went into a horrible burning two week flare so went back up and won't be doing that again. It is really hard to get off of it. Guess I will never know just how much it helps with pain but I do think it helps. I also take xanax for anxiety and to sleep at night.
I tried neurontin for a few days and didn't like the way it made me feel but I have a medphobia and the slightest side effect and I'm off a med.
I have vicodin and was taking a little of it when the pain was really bad but when I upped the dosage to what my doc said to take, which was only a half of a 5/500 pill, it made the anxiety a lot worse. I spent a day with my body over reacting to every sound it heard and that was it for me with the vicodin.
So I'm back to only having tylenol. I do get my liver enzymes checked every six months cause I take 4000 mg a day. I know there are days when I lose track of what I have taken and probably take an extra dose.
I use heat in any form, try to keep stress down but that is impossible sometimes, I keep my muscles stretched which helps, use lidoderm patches on my hands for osteo arthritis which is worse than the fibro at times and my DH gently massaging my shoulders and back helps a lot when these are the worse areas. I also distract myself by doing something that takes my mind off the pain.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 1/24/2010 3:32 PM (GMT -7)   
Hi June, welcome to our fibro family. For fibro I am taking Savella and use a muscle relaxer,
Flexeril (cyclobenzaprine) for flares. These meds have helped me but I'm not pain free.

Exercise, relaxation therapy... listening to music doing deep breathing exercises and heat
also helps. And like Marlee mentioned, I find something to do to distract myself from pain.
Good Luck to you, I hope you find something that works for you!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 1/24/2010 9:44 PM (GMT -7)   
Hi June

And Welcome to the family! Fighting the pain of fibro is a tough job which is often made harder by doctors who are unwilling to give the help we need. I'm with the gals above...I keep busy because doing nothing is depressing, a waste of my life and only makes the fibro worse. But I'm lucky to have a doc who believes in quality of life. Basically what he said was you live you life within reason and he'll do his best to help me be as comfortable as is reasonable. And he's really kept his word!

Like you've found there are so many things to try for fibro and each of us uses a different combination of tactics. I keep moving and try to keep the muscles warm in any way I know how. Like you, June, I've tried all of those new drugs and the side effects were intollerable. I do take narcotic pain medication 24/7 and doc has gotten me regulated so I'm not a zombie nor zoned out...but just right. I see him once a month and we do great. So having a doctor that you can work with is your best tool against pain, in my opinion. I will be honest...I hate taking those pills!!! But I hate the pain more. So to have a life I take them, but very carefully.

I hope what we all share helps and that you continue as part of this wonderful family.
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

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