I WAS DIAG. WITH FIBRO ABOUT A YEAR AGO. I AM COMPLETELY EXHAUSTED - NOT GO TO SLEEP (ALTHOUGH I DO) EXHAUSTION - BUT - I FEEL VERY SICK KIND OF EXHAUSTION. MY LEGS FEEL DETACHED AND HEAVY. I HAVE SEVERE MUSCLE PAIN. I AM TAKING CYMBALTA - DON'T KNOW IF I COULD FEEL ANY WORSE THAN THIS BUT I TAKE IT EVERYDAY. ANY SUGGESTIONS. I AM GETTING DESPERATE.
Your symptoms sound quite a bit like mine...especially the exhaustion and muscle pain. I was diagnosed with fibro and CFS in July, after 2 years of symptoms that kept developing over time. Cymbalta did not work for me either. I build a tolerance to meds very fast so most meds don't work for me or only work a short time. My suggestion would be to find a really good doctor who will listen to you (I know, easier said than done...take this from someone who saw multiple doctors before even getting a diagnosis) and try to find a good treatment regimen. It will take time but it can be done. I recently started Lyrica and although it's only been a few days, I have noticed about a 10% decrease in pain. The side effects aren't so great. I've had blurry vision, dizziness and sleepiness the past few days but any decrease in pain is progress. You have to get your sleep under control. Even if you are sleeping all night, you might not actually be fully sleeping. Most of the time, if you can get your sleep under control, your pain will decrease. Lyrica helps to inhibit Stage 3 and 4 sleep, which is crucial for your body. Elavil is another one that will inhibit sleep. I'll warn you that it does cause extreme sleepiness the next day so my doctor suggested cutting the dose in half to 5 mg and only taking it every other day if it causes you problems. Some people are fine with it, others can't tolerate it. It's worth trying though.
As hard as it might be, keep hanging in there. You are not alone in your feelings of desperation. Unfortunately, fibro is not something that can be fixed immediately.
PLEASE get tested for lyme disease, i live in upstate ny. I have lyme disease,and have symptoms you are describing.Don't let your doctor tell you lyme is non-existant in your area.this is NOT TRUE.Insist on an EXPANDED WESTERN BLOT test.You might want to take a look at the lyme forum on this website.
How did you arrive at the diagnosis of Fibromyalgia?
I know the only sure way at this point to diagnose FM is by deduction. The Dr.s rule out many other possibilities and see if you have a majority of the trigger points that FM sufferers have, then a diagnosis can be made.
A viral panel should be done including EBV, the pneumonaes and parvo.
Elavil is an excellent medicine. It is only sold generically now as amitriptyline. I took it and my symptoms nearly completely cleared. The only reason I had to get off is even at the lowest dose 2.5mg. , I was extremely exhausted the next day.
I have a question for anyone reading this......Can Lyrica be taken "As Needed" ??
The neuralgia aspects of my symptoms are rampant and since Lyrica focuses on calming the nerve endings, I was hoping when I was flaring, I could take it then.
I recently used one of those rubberband exercisers to tighten my chest muscles and shoulders. Ten reps 3 times a day. Not much, easy going. Three days after doing it for two days I have had for a whole week an excruciating cluster migraine turning into neuralgia along both sides of my head and face from my neck and collar bone. Now the neuralgia pain is gone but my skin from the neck to my scalp is burning like I spread ben gay all over it.
Henceforth, I was asking about using Lyrica, when needed.
I think I will post this as a new question so it will be seen better.
Hope I helped Clara
According to my doctor, you have to take Lyrica every day to keep it in your system. I started out at 150mg at night but had a lot of side effects from it so the doctor told me to cut the dose in half. At 75mg, I experience no relief from it. Thankfully I have an appointment to see her today to discuss other options.
I stopped taking Elavil for the same reason. The doctor started me at 10mg but I slept all day so I was told to cut the pill in half and take it every other day instead of every day. I didn't experience anything worthwhile to continue the medicine so I stopped it.
Thank you for all your input. I am having an MRI brain scan today and also was given a change in meds. I stay on the 90 mg. of cymbalta and I am weaning 'up' on Lyrica starting a couple of days agao. I am doing better - the pain has lessened but I am still completely exhausted. Unfortunately I 'hit the wall' with a severe bout of vertigo due to my bi-lateral meniere's and fibro. I just wanted to get out of my own skin but feel that I am doing better. My docs are having me go to the Mayo Clinic as an outpatient to see if they are missing something as they explained there are some 300,000 funky diseases out there and they think they might be missing something. I can't blame them because my list of symptoms are all over the place. I am just looking forward and working towards getting back to my busy life and pray that I don't have to sleep my life away, Thanks so much for all the good input about some tests I don't even know if I have had.
Take care everyone.....clara
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