Having a torrid couple of weeks.... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Having a torrid couple of weeks....

popshaw21 profile image
5 Replies

These last few weeks have been frustating and painful,firstly i had a fall in the middle of the night going to the toilet which has left me in a lot of pain especialy my back.

Thankfully i did'nt hit my head but i have popped a disc which is excruciating and has left me not only feeling low but unable to sleep.

what has made things worse is i can no longer get the "Rotigine patches" to help with the restless legs.The chemist can no longer get them as they have stopped making them.

my doctor has given me an alternative medication called"Ropinirole"which is in tablet form.

I'am on a low starter course at the moment which has not really helped as it is a low dosage and will take sometime before it starts to work.

Meantime im having a terrible time getting off to sleep as the restless legs are causing the pain im feeling worse due to the slipped disc.

I'm feeling so tired and my day is filled with pain,all this is having an impact on my mood.

My rheumatoligist has suggested a possible operation on my back which carrys the the risk of infection,so ive declined any operation as ive had a laminectomy and de-compression of the spine in 1997 which made things worse,and has weakened the disc above and below the de-compression.so im stuck and exstremely fed up.

Written by
popshaw21 profile image
popshaw21
To view profiles and participate in discussions please or .
Read more about...
5 Replies
emmaj profile image
emmaj

I hope the new drugs start to work soon - im in the vicious circle too at the moment - in too much pain to sleep, and just wanted to sleep all the time - tiredness doesnt help the pain,and the pain magnifies the need to sleep - I hope you start to feel more on top of it once the new drugs help a bit xx

popshaw21 profile image
popshaw21 in reply to emmaj

Sorry to hear your having the same pain problem and sleep deprivation and im just like you feeling sleepy throughout the day.

I dread going to bed and i try to persevere until i can't cope anymore so i have to get up.

I hope things improve for you too.

Take care.

pops x

emmaj profile image
emmaj

Thanks hun - you may have tried it but I take 50mg of lyrica (pregabilin) and it does help with the pain and it knocks me out at night or most nights anyway x

MaryF profile image
MaryFAdministrator

Hi there, I am sorry are feeling so very rough - I hope your new medication can kick in and get up to speed, Your back sounds very uncomfortable, I do hope it eases up a bit for you, all the best Mary F x

bluebutterfly101 profile image
bluebutterfly101

Hi there, please don't accept that your chemist cannot get Rotigotine patches. I have been on them for 4 years now and still get them delivered every month from my chemist (Co-op pharmacy) and have just had them delivered for the next month no problem.

If your current chemist cannot get them do ask around at others, maybe you have a cop-op pharmacy near you, as somebody will have them.

Good luck, Monica

You may also like...

Been a rough couple of months

at home but it has been noted that my memory has improved a little, my concentration has vastly...

WHY HAVE I GOT SO MUCH MUSCLE AND JOINT PAIN !!!!!!!!!!!!!

, my neck, shoulder, lower back, left leg, fingers , and feet , ive been taking hydroxychloroquine...

Not sure if i had or am having strokes or TIA's

high blood pressure, low platelettes, problems with cysts, rapid heart rate, nerve pain, sle lupus,...

I have aps but think i have lupus

i cud sleep twelve hrs n still be exhausted i have head aches all time n light makes this worse i...

Hello I have Hughes Syndrome!

lived 3 weeks. This was due to the Hughes Syndrome which the hospital didn't really know about back...