New here! - That zombie feeling

[ednu16]

Hi all,

This year I was diagnosed with wide spread chronic pain (a mix of fibromyalgia and joint hypermobility coupled with an existing blood disorder).

After months of battling, I'm finally off the gabapentin (1200mg 3x a day) and on pregabalin 75 2x a day. Lots of progress.

The problem is I also have insomnia and the sleep deprivation causes me to have tremors, palpitations and lots of other very annoying symptoms.

Does anybody else get these types of symptoms and if so, what do you do to reduce/cope with them? I'm hosting Christmas for my inlaws so 5 people and my 3 year old, first time since diagnosis and I'm petrified I'm going to have a flare up or even worse get an attack of the tremors mid cooking/service.

[RAYJAYC]

Hi ednu16

Welcome to the forum!! Lots of insomniacs here so you're in good company and will no doubt get different methods of coping with it!

I got to a point of sheer desperation with the 'no sleep problem' and have opted to take, some might say the incorrect route and use sleeping tablets. My GP was fully supportive and I have prescriptions for Zopiclone, both 3.75mg & 7.5mg doses to use as & when I need to. Experience has made me an expert as to whether I take the lower or higher dose or when I need a few nights break from them to 'kick start' their effects again. I also have Diazepam to use for my muscle spasms and the side effects from that can 'knock me out' for a night's sleep too.

Depending on what I've got going on the next day dictates what I use but I definitely couldn't manage without sleeping tablets. The leaflet that comes with Zopiclone states that they should only be used for 14 days but as my condition isn't temporary thus can't be 'solved' by other means, my GP and pain team are in agreement that I can & should use them for as long as I need to!

Of course, the medical professionals involved in your career may disagree totally so may not want to prescribe anything at all but they're not the one's suffering so it's definitely worth asking for some!!

Poor you being expected to produce a Christmas dinner for five people in the year you've been diagnosed with all your problems; you're obviously worried about it which will exacerbate your symptoms! 😢 Will you get any help with the cooking? Are these people aware of your illnesses and the possible complete meltdown?? 😩

RJC x

[ednu16 in reply to RAYJAYC]

Thanks RayJayC really helpful to see all sides.

My husband and the inlaws are aware but not sure they fully understand. I will get help but that doesn't mean it won't still exacerbate things ...

We do what we have to do though!

Thanks again

[RAYJAYC]

.....sorry, that should've read " professionals involved in your care" not career - bloomin predictive text!! 😊

RJC x

[Davek723]

Hi there I have done the gabapentine.etc I have tremors sleep deprivation etc plus joints which come out .fingers wrist shoulders knees hips etc.

This is what helps me but wasn't easy.

I took the decision to sort my sleep out

I know go to bed the same time every night and even if I wake I make sure I'm in bed for 7 to 8 hours. this is difficult if I'm in pain but I keep telling myself that even if my brain hasn't rested at least my body has had a rest.

As for Xmas try and see it like this. all of your family will be so proud of you making the effort to do this with all your health issues , if you need a bit of help they will not mind it's Xmas everyone will happily help. my advice would be not to think they way you are

By thinking about all the things that could go wrong there is more chance you will flair up. . just remember if it happens it happens will Xmas still happen , of course it will. will everyone get food .of course they will.

I would think by putting all you focus into preparations the distraction will prevent flair up. ask your closest family to try not to mention your conditions

And not to fuss .

Hope this all makes sense

Xmas will be fine

Have a good one

Dave

[Coastwalker]

*Fibromyalgia is a 'listed' symptom of both Low Thyroid (Hypothyroidism) and also vitamin B12 deficiency.

Doctors are well known for missing/over looking the connection, also the blood ranges are too wide and miss many so too often these patients carry on getting worse with their fibromyalgia all over pains, Chronic Fatigue and brain fog. Many of these patients have told their storys of how they go on to eventually get their proper diagnosis of B12 Deficiency or Low thyroid, for some it is many years later.

*Some fibromyalgia patients can never be cured, as their fibro might not be down to Low thyroid or vitamin B12 Deficiency, but without checking thoroughly some might never know they can be cured of their Fibromyalgia.

Also Doctors are not good at doing blood tests for B12 Def or low thyroid, often will say your bloods are normal/OK/nothing is wrong with you, yet there is something wrong with you as you have all these presenting fibro symptoms.

[ednu16 in reply to Coastwalker]

Had all of these checked! I'm the queen of negative test results. I have a hereditary blood disorder so my blood work is check regularly so no chance it has been missed. Thank you for the information.

[Coastwalker in reply to ednu16]

Many are told their thyroid bloods or vitamin B12 bloods are negative, OK, or normal then find later it is down to low thyroid or vitamin B12 deficiency.

Members now get a printout of our bloods and ranges and pop them up on Thyroid Uk and PAS forums to double check our bloods, members can spot these conditions and other vitamin and iron deficiency's a mile off. many find their Doctors have let them down on these issues.

[Hidden]

Hi Ednu welcome to Fibro forum there are lots of people who suffer sleep deprivation and will give you sound advice as to the way to go - I take 30mgs of amitriptalene and find this helps relax muscles and helps with sleep too - my pain has eased greatly and sleep has improved.

However - I do agree with Coastwalker it might be worth having thyroid function blood tests done - including TPOab & TgAb plus vitamin tests also - as I've found this out only recently my thyroid is positive autoimmune and now I am having vitamin bloods done after asking doc for them - plus waiting to see endocrinologist and it's only through to Coastwalkers advice that I've gone down this line as doc had told me my thyroid was making too much thyroxin at first but never mentioned about other bloods I've mentioned should be done.

Wish you best of luck and take care 🎄🎅🏻

[Gigi71]

I have RA and many other conditions including Hashimotoes Vit b12 and folate deficancy and OA in my lower back so on many meds for this, the one thing that helps me to sleep is 2 paracetamol at night and if I wake in the night 1 more. Not sure why this works for me, but it does, always worth a try. Try not to stress as this makes things worse, easier said than done, seeing the joy on a 3 year olds face at Christmas is wonderful. Wishing you a good Christmas hugs X