So I’ve been diagnosed with fibromyalgia today as I’m in excruciating pain especially my legs and it has been getting worse the past few weeks🙈
I’m 3 months post tx
My consultant said it’s the prograf and given me Quinine sulfate tabs to try.
Has anyone else experienced this ? X
I'm a little confused. Is it the prograf or fibromyalgia?
Guess we’ll never know Boot....
Not sure could be either
Hey Mel
Have you looked into these tablets. I just did a quick search because I had never heard of them.
The Gov.UK website says
gov.uk/drug-safety-update/q...
“Quinine should not be considered a routine treatment for nocturnal leg cramps, and should only be considered when cramps cause regular disruption of sleep. Before use for nocturnal leg cramps, the risks should be carefully considered relative to the potential benefits. Quinine should only be considered:
when cramps are very painful or frequent
when other treatable causes of cramp have been ruled out
when non-pharmacological measures have not worked (eg, passive stretching exercises)”
Other websites e.g from Canada are more critical
google.com/url?sa=t&source=...
Not trying to be negative but flipping heck I hope your doctor has talked you through the use of these tablets? I think I’d want a few answers....
Miles
Hi
I had also read that but the information was from 2016 so may have changed.
I’m seeing my consultant again on Monday as I have never experienced pain like this
Hi Mel. I used to get shocking leg cramps when I had cirrhosis and in my fingers when I played my guitar. Some nights I would be up for a couple of hours dancing round the bedroom. Sometimes I'd just get back in bed and it would start again. I asked my GP about Quinine tablets and he said that they could take up to 2 months to work and that there was no guarantee that they would work. I said that I drank tonic water and he said that I would have to drink a lot of it to equal one Quinine tablet. In the end I decided not to have the tablets because of that discussion ,plus I was already on a lot of medication. Thankfully when I had my transplant the cramp stopped. Hope they can get the pain stopped for you. All the best. Alf
Excellent post Miles!
Respectfully Mel woods, it probably isn't fibromyalgia, of which I was diagnosed about ten years ago. In fibro, there are trigger points that occur in pairs throughout the body.
Hi I get that pain
Apparently you can get fibromyalgia when your body has suffered trauma through a major operation
I don't doubt the pain, or that you have fibro, l just don't think your leg cramps are fibromyalgia. Fibro feels more like an ache than a cramp. Perhaps you should see your gp?
Liver kidney TX
2 weeks post tx
TX to another liver unit
After Transplant
Fibromyalgia?
