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Re: Muscle pain/joint pain

Posted: Fri Jun 27, 2014 5:43 pm
by chrisb
further to my previous posts, one day on gabapentin I felt 100% better, three weeks later I am walking like a 57 year old and not 100 and I am attending two different exercise classes, one to improve my balance and the other to improve my muscle strength.

all those years in daily pain ad it took only one tablet :?

Re: Muscle pain/joint pain

Posted: Sat Jun 28, 2014 8:57 pm
by jbell
Htshep wrote:I am on 15% and my muscle pain/ache seems to be getting worse daily. I am a lifeguard and have not told my employers but am struggling with steps and using my arms. Before this I was fit and strong but since Christmas have to contend with nausea, tiredness and muscle weakness. Keep being told by Docs that I should not be experiencing much yet, then why do I divide my time between work and bed. I am not a baby but feel like nobody takes me seriously. I cry most days. There must be something before transplant( my mum is a match) to make life easier???? :(
Hi I am at 14% and have all the symptoms you describe, I do not understand why your dr would say it is too early for this. My neph says it is all my ckd causing symptoms. You must have a very un-understanding dr. I honestly don't know what can make it easier apart from apparantly feeling a bit or lot better on dialysis.

Re: Muscle pain/joint pain

Posted: Wed Jul 23, 2014 3:40 am
by sporti
Just an update. After being almost incapacitated with this muscle pain all over body but particularly legs for quite some time now the pain has gone! Completely gone - why ??? cos I took myself of allopurinol and now I can walk my dogs for an hour. My muscles are weak but I think the walking will build them up. In a month I will restart allopurinol at half the dose and leave it at that.

Re: Muscle pain/joint pain

Posted: Wed Jul 23, 2014 3:42 am
by sporti
Glad to read your post ChrisB. That's brilliant x

Re: Muscle pain/joint pain

Posted: Mon Sep 21, 2015 11:32 am
by Wolfmoon
:mrgreen: I would really like to know more about these medications. I have been on dialysis since I was 19. And right now I am almost crippled with pain in my body, feet and legs mostly but shoulders wrists and back are also very painful. I've been told that it's fibromyalgia, and that there is no cure. The only thing that they do is give me muscle relaxants and pain medicine. It doesn't help that much. And it's just gotten to the point that I don't even remember what it was like to feel good. Right now a good day is when I don't spend the day in bed too achy and tired to get up.

Re: Muscle pain/joint pain

Posted: Mon Sep 21, 2015 12:05 pm
by sporti
Sorry I can't help you Wolfmoon as i never went on dialysis. Pre transplant I did get muscle pain and that was caused by allopurinol which is used when you get gout. Gout was then treated with a very low dose of prednisolone 3mg. Later as my egfr fell to 9% I got bone pain. Hope you feel better x

Re: Muscle pain/joint pain

Posted: Mon Feb 15, 2016 11:27 pm
by sally k
Hi there I'm a newbee 2 this site. I'm hoping to get some reassurance from others. I've had cauda equina syndrome which has left me with occasional urinary retention repeated utis which r thankfully controlled by taking 1mg hiprex bd..great for those of u suffering from repeated utis btw! Anyway after long term catheterisation had trial without at local hosp. Was still retaining more than 500mls so they replaced with new catheter. .Unfortunately I then contracted 3 nasty bugs seratia, klebseillia & citrobacter that were resistant to mainstream antibiotics eventually after 6 months of ciprofloxacin and the horrible side effects from cipro I was given iv gentamycin which finally cleared up the infections. Shortly after I had continuous dull ache in left side which everyone from gp to consultants immediately assumed was my back causing the pain. They did us which showed an area that needed further evaluation. I then had ct scan which suggested a further ct with contrast to better evaluate the area. This never happened all I was told was that there was just minimal scarring. Prior to my scheduled visit to st thomas for my ongoing back&leg pain from CES. I requested copies of all my results for st thomas as they hv difficulties in getting up to date results from local hosp. It was then apparent that the ct scan discovered al cystin left kidney suggested that ct was repeated with contrast to better evaluated the area. It was about 5 months la5er when I got copies of results and when I asked why this ct with contrast wasn't done gp didn't know but referred me anyway. I had ct with contrast which confirmed the bosniak type11f cyst 3.2cm x 2.2cm . I've since had u/s for gallbladder which showed multi loculated cyst 3.4cm x 2.2cms. Should I be concerned about this? I would be really grateful for any advice anyone can give me from either personal experience or acquired along their renal journey! Looking forward to hearing from you xx

Re: Muscle pain/joint pain

Posted: Wed Feb 17, 2016 10:02 am
by Dixie1
Hi Sally

I am afraid I can't really help with your question as I am not familiar with your condition, but wanted to suggest that you started a new thread for your query, with perhaps 'cauda equine syndrome' as the title? That way it is more likely that someone who may be able to help will see your post? Good luck!

Re: Muscle pain/joint pain

Posted: Wed Feb 17, 2016 7:17 pm
by sally k
Hi thanks so much for your reply & advice I'm not great at working out how to start a new thread but will definitely give it a good fo!! Xx

Re: Muscle pain/joint pain

Posted: Thu Feb 18, 2016 1:11 pm
by Dixie1
Hi Sally

Just go to the main page of the forum and then click in the 'New Topic' button which is up in the left hand corner. Then write in your title in the 'Subject' box and away you go! You could then just copy and paste what you have written above into the new post. :)

Re: Muscle pain/joint pain

Posted: Sat Feb 27, 2016 4:57 pm
by sally k
I did it !!! many thanks Dixie1 for your help x

Re: Muscle pain/joint pain

Posted: Mon Feb 29, 2016 1:40 pm
by Dixie1
Well done! :D Fingers crossed now that someone who may be able to help you will see the post! Good luck!

Re: Muscle pain/joint pain

Posted: Tue May 17, 2016 7:24 pm
by trevski_1965
Just a thought you are not by any chance taking statins? They give me the most terrible joint and muscle pain. Clears up a week after I stopped taking them. My pain was so bad I could not get off the loo without help.

Re: Muscle pain/joint pain

Posted: Sun Aug 04, 2019 7:24 am
by Pinkdiamonds14
Hi All, found this old thread about muscle pain/joint pain and wondered if anyone could offer further advice?
My dad is 14 months past transplant, kidney is doing well. However in the last few months he has started to experience muscle weakness and joint pain in his wrists and knees, he can no longer walk as far and was a keen cyclist but cannot no longer do so. He was very fit pre-op. Renal doctors say all bloods are fine and definitely not a side effect of the meds so go to GP, GP says speak to your renal team! Personally I think it’s all too much of a coincidence not to be related to transplant and meds, he is on MMF and Adoport? He was also put on iron tablets a couple of weeks ago. I will be very appreciative of any replies. Thank you

Re: Muscle pain/joint pain

Posted: Sun Aug 04, 2019 4:27 pm
by wagolynn
Is he taking statins?

I would just keep plugging away at the GP until an answer is found, tell the GP the transplant team do not recognise the symptoms as being caused by the transplant, and the resultant meds.

Best wishes.