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Help and advice

PostPosted: Mon Apr 24, 2017 9:07 pm
by Nidge
Hi all, looking for some help please.

I started with Fibro in 2011 and it was really bad at first but whilst always having pain after a year or so it was mostly confined to flare ups. Having severe weakness and fatigue I would fall to sleep literally everywhere, in the car, in the office, at home, literally everywhere. The only time I would get real sleep disturbances were during flare ups, otherwise always slept really well all the way through the night. In fact the last couple of years its been much better, off all the meds and i started walking every day to and from walk losing four stone in the process.

Recently its changed, Ive had pain in my left upper arm muscles on and off for the last year or so but for the last month this has become unbearable and so much so I cannot put my coat on without nearly crying in pain. But the sleep has drastically changed, from going to light sleep to no sleep night after night. Almost insomnia, this is a huge change for me and consequently the pain has become worse, the weakness and muscle twitches are back with a vengeance.

I take two Trazadone a night, even sleeping pills didn't work. Last week the doc put me on Diazepam to relax the muscle and helps sleep. So far this has worked and i feel better at points in the day again. I worry about the ten day course ending and the sleepless nights starting again.

I just wondered if you guys had experienced this constant tiredness month on month to sudden insomnia and if you have regained the better sleep pattern again after a period of time, as its like a switch has flicked in my brain from being tired all of the time to never tired.

Also any advice on what I can do in terms of excercise or relieving the pain in the left arm?
I need to carry on, I run my own office based business and my son is very ill and needs lost of care.

Re: Help and advice

PostPosted: Tue Apr 25, 2017 1:07 pm
by *Lisa*

Once the Diazepam has finished and if your still getting spasms I would go back to GP. They can reffer you for pain injections as well as maybe introducing a muscle relaxant like baclofen. You could also ask to see a physio as they can advise on the best exercises to do for your arm/symptoms.

I found the Diazapam made me sleep well then once back off them I was back to the norm. I never have restoritive sleep and dream all night long. I also wake at the slighest of noises.

I would maybe look into relaxation techniques esecially before bed. They say not to watch Tv or read before bed. A warm bath and a hot drink maybe.

Re: Help and advice

PostPosted: Tue Apr 25, 2017 7:22 pm
by Nidge
Hi Lisa

I'm dreading going back to sleepless nights and the Diaxepam has really helped with the muscle spasms.
You can get gel earplugs for your ears, these work really well reducing noises. Surely they must have other options to aid sleep. The Trazadone used to work but this now seems innafective

Re: Help and advice

PostPosted: Wed Apr 26, 2017 6:40 pm
by LindyM66
Hi Nidge

I can fall asleep no problem, but the pain/spasms used to wake me. My GP commenced me on diazepam about 3 weeks or so ago, and it seems to help. I cant take it during the day, or Id konk out.
Tramadol, gabapentin, and short term brufen help with the pain, but doesn't take it away completely.
There are other muscle relaxants - speak to your GP.
I appreciate their concern over the addictive nature of some meds, but Ive put it to my GP that this condition isnt going to fo away, and I need his help to manage it. So the addictive nature does 't bother me one jot. Quality of life does though.
Have you tried the adhesive heat pads for the pain in your arm? I find heat really helpful.
Unfortunately, I can't advice on the insomnia, as it's never been an issue for me.
I do wake early, but Im in bed early. More so at the moment as horrendous fatigue is plaging me at the moment.

Much love
Lindy x

Re: Help and advice

PostPosted: Wed Apr 26, 2017 8:17 pm
by Nidge
Hi Lindy

I feel so much more human on diazepam I don't see why I can't take it for sleep and muscle aid. Why should I go back to severe pain and no sleep when i can have this quality of life?

I'm going to speak to my GP about it, like you say it's not an addiction, I don't take it during the day so vant see what the problem is unless there is a genuine health risk with prolonged use at night

Re: Help and advice

PostPosted: Thu Apr 27, 2017 11:19 am
by *Lisa*
I am another one that benefits so much on Diazepam. I sleep better, my muscles dont spasm, my face dont hurt/ache and the morning hang over feeling i dont get!!! it actualy helps my fatigue!!!! plus i am an anxiety sufferer and it helps that so all over its a win win BUT they are not allowed to prescribe this anymore :( on repeat :cry:

I must say that I was using Diazepam for muscle spasms but also other problems in my back causing and exasabating spasms. I am because of this allowed a box for emergancies. I can also call up and request them each time i need them. By doing it this way the doc can assess you and then give them out. I am also having Baclofen these are a muscle relaxant you can have long term so maybe ask about them if you cannot get the Diazepam on repeat.

Re: Help and advice

PostPosted: Thu Apr 27, 2017 8:49 pm
by Nidge
I feel like I can work again, concentrate without brain fog and care for many son properly who has psychosis and autism. Surely something that can transform some bodies wellbeing and health this much should be prescribed if required. It's one at night nothing more than that. I will see what they say but I'm not giving in without a fight, especially if my health and sleep pattern relapses once the course ends. Having no muscle pain in my arm which reduced me to tears has been bliss and the weakness has reduced too.

Re: Help and advice

PostPosted: Thu Apr 27, 2017 8:51 pm
by Nidge
Does the Baclofan work as well Lisa?

Re: Help and advice

PostPosted: Fri Apr 28, 2017 10:38 am
by *Lisa*
The Baclofen are *Ok* I think with me Im needing a higher dosage as not long gone onto them and currently starting off on a low dose.

The trouble with me and my health is that I am the one in control. I have to decide when/if i need to up dosage. Docs seem to just be the drug dealer! In other words, I have never had a medication review EVER! So if i dont request to go up/down/change to another med Im stuck on what I have forever! (if you know what I mean?) I never get asked to come back for review.

Think this has been alot of my problems. Im juggling meds by myself and working out whats good/whats not/what needs changing/introducing as I ask for particular meds to try/take.

I have never seem to have a GP thats taken over my care so to speak but then in a way I suppose I need to be in control as my health excasabates and I can go from being able to get around to bedbound (spasms etc) Its like having a full time job! working out whats I need for the day, assessing myself, working out if I need to up dosages as I have been upping my anti-inflammatories & baclofen when in bad times then adding on the diazepam/extra physiotherapy etc... (not advised by any doc just what i have learnt myself over the years) I even tell doc what i do and there ok with it.

No one has sat me down with the/a plan I have had to work this out myself and then my GP just becomes my drug dealer :shock: :lol: The chemist on ONE ocaasion over 7 years caught up with me and sat me down for a meds review. They only wanted to chat about my inhalors!!! and i dont even have asthma!! I use this for the chest spasms as it restrics my breathing.

When I saw my Immunologist she in fact stated clearly that all these years on a nasal spray that 1) I was prescribed the wrong one & 2) I had been using it the wrong way! :roll:

Docs have left it that I can litrally ring up, say my backs *gone* and get a prescription that goes over to my chemist of not just diazepam but on occassions Morphine to!! and i just collect without no one saying anything or even looking at me!!!!!! :yikes: luckily I do not abuse the meds and only call up when in distress and in need but I just feel like Im left to deal with this myself.... Rant over lol... :chicken-dance: