Exhausted but awake,: Have tried... - Fibromyalgia Acti...

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Exhausted but awake,

Shazzzy profile image
22 Replies

Have tried cutting down on painkillers , only had tramadol today, to see if it will help with the migraines. Have been very tired today as my daughter and partner came up for visit for 2 days. Now exhausted but still awake due to muscle and joint pain, help.

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Shazzzy profile image
Shazzzy
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22 Replies
TheAuthor profile image
TheAuthor

Hi Shazzzy

I am so sorry to read that you are suffering in this way, and I genuinely hope that you start to feel better as soon as possible. I understand what you mean about cutting down on pain killers to help your migraines, as I know only too well that too many pain killers can increase and enhance migraines.

You have my deepest sympathy and I sincerely hope that you can manage to get some good quality sleep.

All my hopes and dreams for you

Ken x

Shazzzy profile image
Shazzzy

Thanks Ken , a little understanding goes a long way.

crowdance profile image
crowdance in reply to Shazzzy

Hi Shazzzy - I'm new here, just diagnosed with fibromyalgia after 9 years of going to doctors and being made to feel that it was all in my head. I can relate to this too - I was awake half the night with pain in my arms and shoulders. i don't really make life easy on myself cos I'm a bit of an exercise freak, but I think why should I let this thing stop me doing what i want to do? Sheer bloody-mindedness over matter :D

Helen

Hi Shazzy, I can relate. Today I drove a hour and a half to be with family, then could only stay about an hour because my legs and feet began to hurt so I left and drove home. Slept for a few hours due to fatigue and now here it is 12:45am and my legs and body hurt again. I wish I could cut back on my paid meds but can't right now. I give you credit for trying and hope you have some success.

Mark

fenbadger profile image
fenbadger

I try to go without meds for a while and only have them when it's really bad - in the theory that my body won't get used to them. Not sure if that's scientific, or even if it works.

suwie profile image
suwie in reply to fenbadger

I cant even cut down been on tramodol niw for iver ten yrs everytime u try I get terrible feels like im climbing the walls I sometimes think I'll just stop them then when I do bang im worse so I take them again dont think ill ever come off them well done you for being able to hugs xxx

fenbadger profile image
fenbadger in reply to suwie

Sounds like a talk with GP would be useful :)

suwie profile image
suwie in reply to fenbadger

I have but when try to do as she says its the same nothing works I'll get there one dsy ..xx

fenbadger profile image
fenbadger in reply to suwie

I feel for you. You've been adjusting for a long time. I'm sometimes unsure what the doc means by "it will take a while to find the right mix for you". Months, years?

Hi Shazzy

I was wondering if you were reducing your painkillers under the instruction of your GP, or not?

It is not usually advisable to reduce/stop taking medications without speaking to your GP first who may be able to help you by changing your medications or introducing another therapy such as physiotherapy or hydrotherapy.

If you have discussed it with your GP then I think you could speak to your GP about alternative/complementary medicines and also possibly topical pain gels for when the pain gets too bad like last night :)

There is a useful fact sheet about complementary/alternative medicines on our Mother site fibroaction.org and thought you may like to take a peek so am giving the link :) from the 'about fibro' section

fibroaction.org/Pages/Compl...

Plus this is helpful when trying to try different therapies that could help you:

Becoming an Expert Patient Article 6 - Accessing treatments and therapies yourself

fibroaction.org/Articles/Be...

Also, this article about medicines in general is quite good too

Becoming an Expert Patient Article 4 - Medications & staying in control

fibroaction.org/Articles/Be...

This FAQ - My current medication doesn't seem to be working, what treatments are recommended for Fibro?

may also have some relevant research/info/links for you

healthunlocked.com/fibroact...

Apologies for the bombardment :o Hope these links are useful for you and would also like to personally suggest some relaxation time a couple of times a day it may be helpful :)

I must say that I'm not a medical professional so anything I've advised should not be taken above the advice of your own GP I'm just sharing some info with a fellow fibromite :)

Please pm me if you'd some links for Relaxation techniques I'd be happy to help :)

Healing fluffies filled with sunshiny smiles

:) xxxsianxxx :)

Juleyanne profile image
Juleyanne

Could any of the Fibro community help me. I have a long history of endometriosis and extensive adhesions and had various ops and investigations over the years. I am now menopausal and of course I realise it is common to have aches and pains in joints and muscles. However, I had a xray of my hips a year or so ago and it revealed early osteoarthritis in both hips particularly the right side plus they are out of alignment. 3 months ago my right knee started aching and feeling stiff and I saw Gp who said it was also osteoarthritis (both my parents have osteoarthritis and artificial knees). A few weeks later my knee popped and I have been on crutches with either a meniscal tear or ACL (cruciate ligament problem - I am awaiting MRI scan results). At night for some years now I wake every night with terrible hip, knee, low back pain and general joint and muscle pain, causing me to twist and turn and stretch in an attempt to ease pain and discomfort. I also have Diverculitis and IBS. I am incredibly stiff first thing in the morning and feel fatigued all the time. The point I am trying to make is,

every time I google my symptoms Fibromygalia comes up! I want to find out how it is diagnosed by Gps or how I can ask for tests as from what I have read so far, it isn't always recognized by some doctors.

in reply to Juleyanne

Hi Juleyanne :)

Welcome to the forum you have come to the right place for information and advice about Fibromyalgia the following link should help you find your way about the site but there's always someone around to answer questions :)

FAQ - I'm relatively new to this community, is there anything I should know?

healthunlocked.com/fibroact...

There is a whole section called 'About Fibro' on our Mother site fibroaction.org which discusses:

Who Is Affected?

What Are The Symptoms?

What Causes Fibro?

How Is Fibro Diagnosed?

How Is Fibro Treated?

What Is The Prognosis?

fibroaction.org/Pages/About...

Fibromyalgia is difficult to diagnose because it's symptoms can be related to other illnesses and diseases. I can't speak for everyone but I went through 2 decades knowing something wasn't right before finally getting a diagnosis. I think sometimes we all get fixated on a particular aspect of our ill health, for me it was my constant back pain and knees dislocating/seizing/locking. It came across as an orthaepedic issue and took over a decade for me to find a doctor who actually heard what I was saying. My bones are healthy I've never broken a bone, it's always been cartiledge, tendons etc that I've damaged. LOLOL I do actually bounce apparently hence 'zeb' (well part of it anyhow) I have had many seriously bad falls too :o :o :o

I have Hypermobility and secondary Fibromyalgia among many other things.

I hope you find the information helpful and please don't be afraid to ask any questions as we're quite a friendly bunch that like to care and share and someone will always be along to answer you :)

Take care and let us know how you get on :)

:) xxxsianxxx :)

aura2 profile image
aura2

Why oh why .when we are exhausted can we not sleep ? I am really with you Shazzy .i had a lovely day out with a friend yesterday but have been awake most of the night in pain wishing it was morning , now I am so tired I feel like crying . Sending warm hugs and positive thoughts for a good sleep tonight xx

Shazzzy profile image
Shazzzy in reply to aura2

Hi Aura2, hope you get a good sleep tonight. I feel more relaxed today so hoping for a whole nights sleep. Shazzzy

Jjudith profile image
Jjudith in reply to aura2

If I try to sleep and worry about not sleeping then I am really exhausted. I find that if I just rest and relax it feels nearly as good as having a good night's sleep. I use my audiobooks and they are life-savers. I lie and listen to my stories - I doze and miss bits, and then wake up and listen to another bit, sometimes I have to listen to books many times over before I listen to the whole story, but it still distracts me and makes me feel content with being awake, and it also sends me off to sleep sometimes because I am always relaxed when I am awake. As well as keeping me relaxed some of the stories are really good and I love them. I listen through earphones and it doesn't disturb my other half who is a very light sleeper.

dobie62 profile image
dobie62

I am so so tired this morning, had a late night due to visiting sister for bbq did not get to bed till after 2am and up at 4.30am and in pain as i did not take al my meds as i had had a drink for the first time in months, not worth it stick lemonade next time.n going to have a nice hot bath put clean pj's on and that will be me for the day. stupid hubby left our mobiles at his sisters so he will have to go and pick them off and also drop his daughter back off with her mum.

hope that all fellow sufferers have a happy easter and heres wishing as many pain free/reduced pain day ahead.

janet.

Lambchop-1 profile image
Lambchop-1

Hi I'm trying out duloxetine it's early days yet. This is through pain clini so fingers crossed and hope you feel better soon :)

kes2008 profile image
kes2008

Help for migraines I also suffer very Badly with these a tipi was told by my pharmacist was if u feel it starting put 3 soluble aspirin under your tongue it does work.. For sleeping I am the same I have a heat pad input in the microwave before bed I take 3 amatriptalin on eve about 1/2hour before bed and take heat sack with you either lay it on your chest or down ur back this helps with pain and helps u sleep .. Well does me .. Anyhow ...

Shazzzy profile image
Shazzzy

Thank you to everyone who took the time to reply it was very encouraging, I will check out all advice and websites mentioned, and will arrange to see gp regarding reduction of meds as I just decided to do it immediately out of desperation. I cannot deal with the battering Im taking from migraines ( up to 7 days at a time) on top of athritis and fibro, and have tried about every migraine medication there is. If anyone uses any alternative treatments that help I would love to here from you, kind regards Shazzzy

Jjudith profile image
Jjudith in reply to Shazzzy

When I had really bad migraine type headaches I went to a dentist trained in face pain in USA and he gave me a trigger point injection, the pain relief was instant. Since then I have used face frames - I have one which I wear at night, and a smaller one that I can wear in the daytime. The funny thing is that it really works, apparently these face frames relax the lateral pterygoids, the muscles that work your jaw, and then that relaxes your whole face and the muscles of your head. No painkiller worked at all for me, so I find it strange that these little devices really do work for me.

Jjudith profile image
Jjudith

I now take no medications whatsoever and feel much better without them, as I seem to have paradoxical effects or serious side effects with most medicines, they were part of the problem. But I replaced the analgesics and other medicines with something else as I cut them down.

For example, you could have a series of massages at the time you start reducing medicines, studies show that fibromites who have massage can manage with about a third less medication. I taught myself trigger point massage from the book by Clair Davies called Trigger Point Massage Workbook, and I use tennis balls and a theracane to help with self-massage and that was a turning point for dealing with pain myself.

You could also try hot/cold packs for pain. I know hot packs are usual but some pains such as the pain in my deltoids and face do respond to alternative hot and cold packs. You could also try meditation which I found very useful for helping me to put pain and other distressing symptoms in a context so that they were less intrustive into my life, the pain is the same but somehow you learn to live with it and you put the pain into a place where it has to live with you. There is a charity called Breathworks that I found very useful when I started meditating.

I also use mouth frames for face pain. These were made by a specialist TMJ dentist.

I also find my TENS machine is useful especially for my bladder symptoms, also for acute pain, but when I was at the Fibro conference recently I found another machine that I would like to try called Alpha-Stim which looks very promising and you can try it out for a few weeks before you commit yourself to see if it works. I don't know if it works, but it looks really promising for helping with sleep and pain. The person selling it is a fibromite who claims her life has been really changed, her name is Linda, if you want contact details then send me a personal message.

I also use a special diet which helps with my bladder problems, and use Activated Charcoal for IBS symptoms.

I have a memory foam mattress and also I do pilates and yoga, and also I do try to keep my weight down, I know that is a problem for people with fibro, but it helps with leg and back pain in my case.

I also think that finding out more about fibro seemed to help a great deal, it helped me to realise that I have to live with fibro and I have to find out how we can get along together, rather than seeing it as the enemy.

Hope this helps. Love and hugs to you x

aura2 profile image
aura2

One of the best bits if advice I have been given is to take the list of fibro symtoms and deal with each one on its own even if you only improve each one by a tiny amount it could add up to quite a lot .. Following this i sleep well when I pace and relax it is only when I am exhausted I cant sleep. I was told it is because the brain doesnt slow done enough, I am still working on this one will sort it one day I hope x

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