Fibromyalgia Action UK
40,238 members52,348 posts

Pain Killers and constant pain and thoughts

I was just thinking about pain killers why wont doctors give fibro suffers stronger pain killers as many of the ones we are getting are for mild to moderate pain. i dont think they understand what it is like to live 24/7 with severe pain its not like its in 1 spot i have it all over and there is not 1 minute of the day where i am pain free it sometimes feels like a crushing of my body inside. I have terrible pain in the knees i can not kneel down and find it painful most of the time to go up and down stairs. I have had CT scan x rays and nothing shows up so must be down to fibro again. I sometimes think they just do a few tests and then blame the fibro as they cant be bothered or it will cost to much to do more tests. I do feel that there are other things going on not just fibro. Also anything else that crops up so they dont have to bother to much the blame it on fibro.

8 Replies
oldestnewest

Hi Tasha unfortunately this fibro can go on for a very long time and strong meds would destroy our livers if we had them for the long haul. I know it goes from one part of the body today to another part tomorrow and is very tiring and distressing. You need lots of rest and a little exercise like aqua aerobics. I amended it soundeasy but it isn’t. Wishing you well.

2 likes
Reply

Hello tasha2

I've been having problems with my knees. The left knee is so bad that I scream when I get up after sitting for a while. I recently went to a specialist and found out that I have to have a total knee replacement. I tried cortisone and other shots, they are not helping anymore.

I feel your pain and I hope you get some relief soon.

Take care.

Reply

Even the medium pain relievers can damage your liver and kidneys, so I don't think it's that so much. They can do regular checks on them to ensure they are still healthy.

I still think a lot of doctors don't believe in fibro as an illness and doubt understand the extent and severity of pain we are having to deal with. My pain is all over every day, non stop. Sometimes it is more severe in certain areas and then stops me from being able to be so mobile. Then at other times it's so severe all over that I can hardly get out of bed to go to the loo and I'm usually like that and bed bound for a minimum of three days.

When we visit the docs we are having a good day, our good day is still in pain but not as bad, so we don't go in doubled up in pain crying because it's so bad and hardly being able to move, so they don't see us at our worst. I think, because of these factors, they just don't seem to realise exactly how bad and debilitating it is. They therefore prescribe medium pain relievers and think this will do the trick. Then there's the issue of money and if the more efficient meds costs more you can guarantee they won't prescribe them unless they have to.

Reply

Hi Tasha,

I have had awful pain for a very longtime my knee pains started when I was 14 told it was growing pains but never went away I started training to be a nurse when I was 18 a job I had always wanted to do but just before the finals I was medically retired with the knees couldn’t stand the pain. I’ve had a lot of artheroscopies on left knee several on right then because my now ex husband had BUPA I had a knee replacement at 42 which was never succussful but once me and hubby separated and divorced and I’m back to NHS they will not do anything. I struggle to walk the pain has me in tears was checked a couple of weeks ago and they gladly refuse to replace the knees because of my age I was in tears when I left because I am so tired of it. It has affected my hips and back I also have OA in my hands I deliberately never mention fybro when I go to the hospital half the time they don’t read the notes! I do however take Slow release morphine morning and night and oromorph if I have breakthrough pain. I have tried gabapentin, pregabalin and they did nothing at all. Been on morphine for over 20 years at lest now I have come off it before going cold turkey which is awful but I have done it to have a break to be able to lower the dose as all drs want to do is increase it and I won’t which is why I have oromorph because I am in control. Of that. Worryingly two of my 3 sons have knee problems and other problems including fybro and they are both on strong pain relief one is on OxyContin slow release and oxycodone for breakthrough pain. The other is on the same as me without these painkillers they wouldn’t be able to work. One will be 30 this year the other 29 and it does worry me that they have been on these for a while now I feel I am to blame In a way as they have inherited the joint problems from me. My daughter also has a Labral tear in her hip which she has been told will need a hip replacement at some stage she is currently pregnant and is being monitored very carefully she takes tramadol but has had to lower it right down and they want her to stop at 37 weeks which is tough because of the pain. I don’t know whether you have a decent pain clinic where you are if so might be worth seeing someone. I totally understand the knee thing though. I have had my sofas raised do I can get off of them but the pain it causes to get up I have to sit with my legs straight because having them bent all day is excruciating and also after a short time makes my hips so bad. I use wheatbags on them as well to help the pain when it’s got too bad that does help at times.

I hope you find some relief.

Jackie

Reply

Ive had osteoarthritis bone on bone in both knees for 8 years and need total knee replacements but was told 8 years ago, at the age of 50 that I was too young. Recently I have been told the usual thing that I need to lose weight before they will do them. They keep making excuses. Ive put weight on because I am less mobile and in constant pain, taking meds which make weight gain easy. My feet have now decided to join in and I have arthritis in both feet and ruptured achilles along with lymphedema and arthritis in neck, arms, shoulders and hands because I have to use walking aids. If they had given me knee replacements 8 years ago I wouldn't have the mobility problems or pain I have now. I have been given tramadol (which I use sparingly because it zones me out) voltarol 12 hour gel (which gets lathered on), Nortryptiline for pain and I also use magnesium spray and tens machine with the occasional hot wax hand bath to ease joint stiffness in my hands. Ive had acupuncture, physiotherapy and hydrotherapy and cortisone injections. I still have 24/7 pain.

I have fought for many years to get to the bottom of my ever increasing symptoms but I finally found a listening GP who has diagnosed underactive thyroid. I have now started thyroid meds and its early days and Im not saying its the whole answer to my health problems but already I feel less fatigued. I know I won't get rid of osteoarthritis but I just want to feel human again.

Gentle hugs Joolz.x

Reply

Has anyone tried marijuana patches and did it give relief ?

Reply

How Tasha 2. I totally understand how u feel. My feet knees seem to be particularly worse at the moment. I like u cannot kneel oon my right knee and have not been able to do this for many years, howevermutt left knee seems to feel very tight and i kneel done. I sometime feel people don't take my illness as real. My regular gp is on the sick and had to see a different doctor and i could see what he was thinking he looked at me as if i was making my pain was all in my head. Sending you gentle hugs. 😃

Reply

I have fast acting oxy and only take it when I'm in server pain as some adays without it I can't stand or walk I feel so much pain and weak,it's the only thing that helps me .At the same time I take pregablin and co hydra mol. I have gone onto a gluten free diet recently with limited carbs and no cafine at present this is the 3 rd week I'm not so much like the tin man.stiff wasn't the word.I have tried acupuncture didn't help me, also hydrotherapy this was good but as I was so bad twice I couldn't get there the kicked me off the course saying u can only have 2 sessions where ur unable to come then you loose your place.ridiculus I know when you have fybro each day you can be so different.

Reply

You may also like...