Sticky Blood-Hughes Syndrome Support
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Insomnia and muscle spasms - off to st t's x

Hi all - im finally off to st thomas' today,and to start my plaquenil - so wish me luck!!!

With all your advice on here im going to take notes and ask for heparin.

Ive had two hours sleep with my muscles in spasm and insomnia so i can only assume my inr is low, with the kidney problesm lately i just cant seem to stabilise my levels.

Does anyone know if the plaquenil has helped them with the twitching too x

9 Replies

Hi Emmaj,

I want to wish you GOOD LUCK at St Thomas today!

Please tell us how it goes for you.



Thank you so much hun x


Good luck.. Hope you get some answers? I had my first muscle spasm last nite in my legs was very scary!! Let us know how it went asap!!! :0)


Good luck today. The Plaquenil helps with a lot--esp my general feeling of just "feeling sick" however, I have muscle spasms in my legs from time to time. I use a book with exercise for arthritis that help me do stretching to loosen the muscles. Hope all goes well.


Hi, best of luck with this, I am not on Plaquenil or Warfarin, but do get twitching muscles, I use a magnesium spray, but obviously if I was on either of the above would check it out with consultant/GP first. MaryF


Well guys after a 400 mile round trip were finally home!! Was very gutted when we got there and was told my consultant had phoned in sick - it cant be helped but i wish id have been given the chance to wait and see him, but then sometimes a fresh pair of eyes isnt a bad thing. No answers really to the kidney problesm, not typical of anything yet again as per usual!!! Anyway, i have to have blood tests to rule out lupus again, but the doctor i saw says he would hazard a guess as to it being fibromyalgia causing the inflammation in my body - which is a bit of a relief as fibromyalgia doesnt apparently cause lasting damage to organs - it could also explain my inflammation in my neck,jaw,head,ovaries and bowels in the past and present! He gave me a manual on it but couldnt give me a diagnosis as such as hes not my doctor so non committal but it all fits so lets hope my doctor will put it on paper - and give some help and answers to my consultant urologist here - which should already have been done anyway but hey ho... I pushed for plaquenil as advised by dave,but when i got to the chemist they could only give me hydrocloxiquone (cant spell it or say it ha) Ive started that tonight but will speak to my gp about changing it over. Ive also been given amitrypline to help with sleeping,and the anxiety and depression that comes with having so much pain and tiredness- so here goes to my new life and lets hope in january ill get a definite diagnosis and these drugs will help it in the meantime,and that my scan on 22nd shows no more inflammation in kidneys - id have childbirth twice over than that pain!

Thanks for all your advice and I hope your all well as can be and I can offer advice and hugs via a post when you all need one tooxx


Emmaj--- i am a big fan of hydroxy-- you must give it time -- i built up to a 200 ml twice a day -- if memory serves me right {scary } --- it helped a lot -what i see is people get impatient-- so give it time and let me know how you get along with it -- i take many meds and it hasn't interfered with any as of yet and i started in Nov. 2011. any questions as to me any ways feel free to ask ..

Casey and jet


O Emm -- i also have two types of tremors and muscle spasms -- back -legs -- arms and believe it or not face

Back spasms got so bad i tore a loner lumbar muscle-- was lifting a very small garden trailer - but -- Dc said it could of been an injury from past . but the needle from which my trigger point injections {i get every three weeks {give or take a week ] the needle was vibrating to a point that she was astonished and commented to me - i could easily feel it. The Hydroxy helped with my numbness and tingling in arms hands and legs . as i got worse Paincare stepped in when it became pain and i an on 2 types of muscle relaxers and 3 types on narcotics for pain now.and i still get the shots together they keep me ok most of the time .


Im glad youve found something that helps - even if it is a concoction of meds!! Thanks for your reply. My spasms have been better with amitrypline and i am at last sleeping albeit a very deep sleep for my liking and i feel very spaced out through the day - but i felt a bit like this on an hours sleep a night anyway! Ill keep at it and hopefully the drugs will work xx


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