Another trip on the roller coaster

Well that's good news! Might as well get on with it so you can get back to real life. Hang in there,

Love,

My neuts still zero. As least there have identified type of bug. Have tge help onto a coommode this afternoon cos losts all strength right thigh. Yet managed it this morning.

Teesa

Oh Tessa, that sounds rough, bless you....

glad they’ve found the guilty bug though.

hugs xxx

Physio came about my muscle weakness and pain and is mystified why just in specific places. Dr suggested vit D which i was taking daily before I came in. I had similar muscle pain earlier in year and was low vit D. Hard to remember all the things that have gone wrong with you. At least thats a simple fix.

Tessa

I hope they can get this knocked on the head for you and you can come home before too long.  It's most unfair when other things develop on top of the standard treatment.   Enough already! 

Another thought to ask:  my muscle / joint problems seem to have been due to toxicity to the Aciclovir I have been on for 2 1/2 years.  They swapped me onto an alternative antiviral Famciclovir and it has eased considerably.   It only started to develop when I came off the Prednisolone I had been taking for GvHD.  I guess that was masking it.   Have you been on Aciclovir for ever, as well? 

Hugs and love, Sheri  xxx

Yes been on acliclovir nearlty 3 years T

Ah...so maybe worth mentioning it to Dr O and asking if it is a possibility?   

I was absolutely crippled by muscle / joint pain and was really scared it might be permanent.  Couldn't hardly walk and was like it for 6 months.

A week off Aciclovir and it went.  xx

I was also on Aciclovir for 3 years and yes, I did have bad muscle/joint pain........never associated it with Aciclovir but it did start to clear up soon after coming off it........ but was also becoming more active - but worth a mention.

Thanks both. Mine seems localised to the deep muscle of the thighs not the joints. Dr came at 7.41 am just after two nurses got me off commode. Had to give me morphine in the night as it was too painful to even stand with help.

Going to give me vit d and a muscle protein. Not the best time to come off aciclvoir as immunity still zero. But it might all be contributing. I hate being so immobile and dependent.

Tessa

Oh Tessa,

what a total pain in the ****!
sending you love and a germ-free hug xxx