Always ill is this right?: I have... - Fibromyalgia Acti...

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Always ill is this right?

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I have putnoff asking this for ages I see posts about fkare uos I dont seem to get fkare ups I am in permenant high degree of pain in shoulders collar bone back feet legs etc shoulders never ever ease and I cant use arms much the rest varies by the day my meds keep it it semi bearabke but I cant even empty bins I feel such a laxy person and soend 90 percent of time laying diwn because my back wont take more than fuve minutes uoright with out unbearable pain

Should I be this disabled am on tramadol three times daily paracetmol two four times daily gaba penton or something twice a day plus heart and blood pressure meds

I feel such a coward listeningbto what others cope with

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20 Replies
fairytails profile image
fairytails

i think everyone has it different and it also goes back to how much pain u can take nobody can tell u becuase everyone handles it differently hun x me for instance i have pain everyday like you but somedays are definately worse than others but it is always there ! i take cocodamol everyday and it sometimes works sometimes just doesnt tramadol sent me crazy itching and tripping out so cant bare them! lol! so i think a flare up in some of us is just complete body stop pain and couch or bed! where like us its all the time ? your in noway a coward xxxx

I get flare ups in my neck and shoulders but everyday I am in pain with my ribs I can't bear to touch them, myself let alone anyone hug or touch me, my arthritis hurts cos I can't take the meds prescribed for it my GP is still trying to find something, I've had to give up so many hobbies as I can't do anything for more than a few minutes at a time and just sitting makes me seize up.... But I am still lucky compared to the meds you have to take for other problems.. have you mentioned this to your GP he might be able to change your fibro meds for something that suits you better and doesn't interfere with your other meds...

Good luck

VG x

floozy profile image
floozy

I find that Im in pain every day , and I cant remember what it feels like not to be in pain . I have some areas that always hurt usually more than others but when I have a flare up the pain intensifies to a different level , but not only that every other symptom I suffer due to this wicked syndrome intensifies too . I take 22 tablets a day now due to fm and other things I suffer from but still the pain doesnt subside . bless you fadedblossom, it doesnt mean that were lazy I think we show considerable strength and determination just to keep going everyday . Lots of people I know are suffering with flu right now and are amazed that this is very similar to how I feel suffering with fm , positive thoughts to you sweetie x

I think i have a high pain threshold walked 100 metres on a broken ankle and had four kids with no meds atnall and never even whimpered lol age is catching me up I fear i also have athritis in multiple sites and it is increasing rapidly I just feel so damn helpless and whiney lol

irisjoy profile image
irisjoy

hi fadedblossom

i am on tramadol too , i take 2 tabs 3 times a day with paracetamol which makes it work more effectively, i also take 1 slow release tramadol at night( again with paracetamol) so i have tramadol in my system all the time, do you think this would be better for you ?

My rheummy consultant sent my GP a list of meds for me and my GP tweeks the dose xx

All my tramadol is slow release I take 500mg three times a day and they overlap with 1000 mg paracetamol four times a day as well the lyrica the heart meds and fluoxtine and blood pressure tabs I cant figure out why I am in pain but bearable until I do the smallest thing

pjmain profile image
pjmain

Hi

I too have pains that are just too much, I am on co-cordamol (30/500mg 2x4 a day), Naproxen (500mg 2xaday), pregablin, (300mg 2xaday), citalapram (40mg 1 aday), a tablet for my stomach, I feel like a rattle on days, I find the worse pain is when I am relaxed, as it tends to be a stabbing pain......I have an appointment with rhymotolgy in the next 8 weeks...Hoping for some help.....:(

xx

Aisha profile image
Aisha in reply topjmain

I'm reading about how much medication you are all on!! Besides Citalapram 20mg at night for my depression and Amitriptian 50mg for pain that I don't think really helps! And Nexium for my Gastritis and I'm Diabetic the pain relief I take fo my Fibro is a Morphine Fentanyl Patch, Liquid Oramoph Morphine and Paracetamol has really helped my Pains which I get more in my legs!

pjmain profile image
pjmain in reply toAisha

Hello, I had a knock by a car 5 years ago and been on some meds for that, but looking back I have had tenderness on my legs and arms gor over 10 years....xx

Aisha profile image
Aisha in reply topjmain

They say that Fibromyalgia can be brought on by Trauma although I was diagnosed back in 2001 I never suffered with any pain till my mum died in 2008 and since then its been all down hill for pains which started in my legs only! So don't rule this out you may have the starting of Fibro!! Take care....xx

pjmain profile image
pjmain in reply toAisha

Yes I thought about this, but cant think what may have triggered it off 10 years ago..x

Ozzygirl64 profile image
Ozzygirl64

I am on 8 tramadol a day plus up to 8 paracetamol a day and I am still in pain and always feeling ill. Of course I do have other things going on as well so it does not help. I am in constant pain and have been for over 22 years since before diagnoses and I was told my FMS is chronic so I will never be free from pain. I am not on the tramadol for the fibro though, they are for something else. If things get worse for you go back and see your GP. You may well be at the chronic stage and no amount of pain relief will help. Also I think you would discover if you stopped all the pain meds your pain would be far worse. That is the only way to tell if meds are working. You notice the difference you stop taking them. What amazes me is that in the end we do get used to it and go along the lines of 'oh well, stuck with it now, no going back' xxxxx

If i miss just one lot of tablets i am in screaming agony so they are helping but just DONT understand how some folks can even empty the bin out lol makes me feel a real whingerlike you saybthere are other problems i am also in heart failure. ...

Bella_Baby profile image
Bella_Baby

Hello fadedblossom :)

I too am 'always in pain'. It used to flare ups.. long ones at that... and sometimes I confuse myself on what to call it lol. But honestly... I'm always in pain.. then there are times when the pain skyrockets out of control and I'm left an emotional mess.. not able to function at all.

With the 'normal' pain... I still cannot function much.. but more than when I completely 'drop out'. Fibromyalgia can be experienced on all different kinds of levels. Unfortunately for some of us, it is a very high level.

I totally understand where you are at. Gentle hugs xoxox

Thanks all of you I was taught at risk of a beatimg from an early age never to complain or cry and so feel terribke doing so lol

LindseyMid profile image
LindseyMid

FB, it sounds like you're having a really tough time! The severity of Fibro varies enormously and Fibro can be very disabling when uncontrolled (research has shown that it can have more of an impact on people's lives than many other conditions with better levels of awareness, such as Lupus or arthritis).

Are you getting any treatment other than Tramadol? The optimum treatment of Fibro would usually involve a multi-disciplinary approach with non-medication treatments as well as, quite possible multiple medications.

Do you know what the issue with your back is? Whilst Fibro can and does cause pain all over, localised predictable pain often has another or associated cause (such as myofascial pain) that may well require targeted treatment.

My spine is full of arthritis and all the little cushion bits have worn off if i had it fused there would be too much to do and I never ever want anyone to op on my back old family incident lol

I have had manips therapy and physio but no help at all I am told my arthritis is very agressive and dengerative in six months I have gone from walking 50 metres with stick to a max of five without pain i run high fevers when arthritis attacks they actually think i may have ankolizing spondo or lateral something told them dont want to know. Pain management clinic was hampered by my having heart failure amongst other things its just I hear these wonderful ladies going for a stroll or cooking dinner and I can't even cope with that :( makes me feel such a wimp lol

LindseyMid profile image
LindseyMid in reply to

fb - you clearly have severe and complex medical problems! You are not being a wimp, I promise :)

Fibro can be extremely hard to manage when you also have other conditions that are unmanageable because they will keep triggering off the Fibro. That doesn't mean there is nothing that can be done, but don't think it's in any way your fault that your Fibro is out of control!

I understand not wanting to get more diagnoses, but if you could find out exactly what the issue with your back is, it's possible you could get better treatments. Many of the treatments for Rheumatoid Arthritis and Lupus are also used for severe Ankylosing Spondylitis, for example.

nhs.uk/Conditions/Ankylosin...

This would be something you would need to be seeing a rheumy about.

Have checked the link re meds and treatment my rheumy is due to re asses me in 6 weeks I will ask some questions lotza luv from the wimo lol

littlemisshurty profile image
littlemisshurty

Iv had a major flare up last 2 weeks iv been in bed every chance I get if I didn't have my cats to feed I'd not get up..I'm in awful pain my elbow feels broke can't lift a thing..from my waist down went paralysed yesterday terrified me as I'm on own.I'm always in pain and brain foggy till about 2 hours after meds..I have screws and rods in spine as well open was September I have low blood presure and feel faint having but b12 injections as well I'm all over the place so it's normal to feel bad all the time..had it so long and it's got gradually worse

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