Pain

[jackie4ball]

Hi

I am new on this part of healthunlocked I am already on Fibromyalgia site and arthritis site. I take lots of pain relief for the fibro and OA which I have in my hands, knees and hips. Down here where I live we don’t have a pain clinic where you see a Dr all we have is somewhere where you go to talk to an OT or mental health nurse or mindfulness. There are days that I would remove my legs from the waist down if I truly could had problems with my knees for a long time started when I was 14 I am now 55. Had many arthroscopic sand lateral releases had one knee replacement but only because my husband at the time had BUPA same consultant wouldn’t do it in NHS but that was 11 years ago it has never been right my other knee has also deteriorated but it all seems to be age related as to whether they will do replacements. I feel my life doesn’t have a lot of purpose as the pain sometimes completely takes over. I don’t mean I sit thinking about it as I don’t. I have got where I am scared to go out alone as have had some falls so I have to have someone but this means I am becoming more and more housebound and isolated. I take slow release MST morning and night Amytryptiline 75mg at night, clonazepam for restless legs only 1mg Oromorph for breakthrough pain, zolpidem to help me sleep! Doesn’t happen as I have insomnia because of the pain. Just wondering if anyone else has anu ideas to help with the pain. I do cross stitch to keep my mind free but recently had hand surgery so havent been able to stitch. I have tried so many pills over the years Gabapentin and pregabalin neither helped. I cant take anti inflammatories. Also done homeopathic route.

Thanks

Jackie

[Shooby]

Hi jackie4ball I'm with you on the pain things fibro, Osteo Arthritis, etc.etc. I feel for you but I do understand the whole lack of support and feeling that you'd be better off without the offending limbs but babe you are NOT alone, when your down you get on this site and talk, rant whatever we are all here for each other gentle hugs Linda xxx

[SusieJo1948]

Jacky4ball young,e really have it bad I can use heat Percocet oxycontine 12hour pills I take2 a day zanaflex it helps but it's not enough. But that's all they give me. I do the best I can if I was you I think I would sit down and have a good cry sometimes it helps. I hope things get better for you. disruptors

[rosewine]

It sounds as though you have so many areas of pain it is difficult to think of anything more you can do on the meds front. Have you tried alternative methods of pain relief such as acupuncture, hydrotherapy or a Tens machine. Just a thought it could be worth a try. I lent my friend my portable Tens and it really helped her pain. She now has a NHS Tens machine and she looked better than I have ever seen her since she has been using it. She too has osteo in her knees, hips and back, Hope you can find something that helps.x

[jackie4ball in reply to rosewine]

Thanks Rosewine but I have literally gone down every route possible if the surgeon would do knee replacements I’m sure it would give me some quality of life back but seems he will not do that until I am older 55 now. I have sat with needles from one end of my body to the orher, had homeopathy even cutting all foods with additives and stuff in. Tried tens machine just feel as if I am coming up against a brick wall all the time. Gets very frustrating I am going to have a new grandchild in March and want to be able to hold it and be there. Not just as an ornament. Sick of just being filed out pills which I am now addicted to, no sleep because the pain is so bad. But just fobbed off all the time with one thing and another I know my knees have had it but it’s the other problems it now causes with my hips and back.

[rosewine in reply to jackie4ball]

Yes I understand. Both my two close friends have had one knee replaced. Strangely neither had any hip problems. They both made complete recovery from the operation and no longer needed to use a stick. Unfortunately,now they both have hip problems on the one side and are back with their sticks. The older one is due an operation in the next few months. The one who will be 70 soon and is in alot of pain and limps badly has been told her hip"isn't bad enough to operate on". I know NHS funds are limited but they don't have to stand the pain do they. Bith of them are grandmother's and admit they just can't interact with a the smallest a grandchildren as they did with the a oldest because of their a joint problems. Wish I could be of more help. As usual I am propped up in bed trying to put off trying to settle even though I am exhausted as I know sleep will mostly be elusive as as soon as I start turning in bed the pain starts to hit. I can truly sympathise. Take care.x

[jackie4ball in reply to rosewine]

I’m with you on the pain at night mine is normally the minute I am in bed I’m not tired anymore then I just lie there and counting sheep or any other animal really doesn’t work. Last night I fell asleep on my back and woke in the early hours with horrendous backache going down to my hip took a long time for me to get in a position for it to ease off seems whichever way I sleep I wake up with pain. I have just got some Epsom salt shower gel and oil to try to see if that helps with the pain I can’t have them in the bath as I have a wet room. I will try anything to see if it helps and have seen a lot of people say they did help so what can I lose. I had one partial knee replacement privately 11 and a half years ago amazing what you can get when money is involved saw same consultant NHS nothing he could do because of my age I would have been early 40’s he knew the knees had had it saw same guy privately through my now ex husband two weeks later he did this partial knee replacement basically the kneecap which really needed a total as I swear that would have worked this one was never successful because it just wasn’t stable just folds under me on stairs. But same consultant is now a professor so doubt I will ever see him again! His under Drs say I am just too young again all money related but how much am I costing in drugs! I’m now 55 May get new knees when I’m 65 if I’m lucky only 10 years to wait. But I shouldn’t moan really my sister was diagnosed with stage 4 Cancer about 8 weeks ago which is bad she has it in and on her bowel and ovaries and uterus and a couple of spots on her liver which they said they weren’t worried about so far she has had no treatment at all was sent to her GP for pain relief as she is in agony as something is pressing on her sciatic nerve and they gave her Amytryptiline and ibuprofen (which she shouldn’t take because of stomach ulcers) the only way it was diagnosed was the fact she kept going to GP and A&E with this pain and ended up accidentally taking too many codeine trying to get rid of the pain so they did a scan of her liver and must have seen a mass as she was told a couple of weeks later she had cancer no biopsy or anything had been done. When she asked what they could do Dr shrugged his shoulders. Now it’s just a waiting game as to when they are going to do anything as you can think my mum is very worried as my sister is on the phone everyday in tears but she will not chase up the hospital or her nurse she has been allocated to answer her questions and help her and her husband won’t do anything either. The NHS are supposed to have a treatment plan in place within 14 days of diagnosis but I think she seems to be going under the radar somehow. They are also supposed to have weekly meetings. Just hoping something happens this week as she had a liver MRI on Friday. Fingers crossed.

Hope you slept.

Take care

Jackie x

[rosewine in reply to jackie4ball]

So sorry about your sister. My husband has cancer and we will be seeing the oncologist in Wednesday to see whether the drugs and radiotherapy has reduced his tumours. One of his younger brothers is terminally ill with bladder and prostrate cancer and he seems now to be out on some kind of limb as well. The drugs they prescribe for the pain don't suit him and make him feel really weird and he doesn't seem to be getting any answers. He has already lost another younger brother to cancer. Watching those you love go through all this is really difficult and I honestly think the stress of it all makes our fibro worse.

I used to have Epsom salts baths and they really helped but when we moved to this bungalow the choice was either a bath or a shower and as my husband only showered and I was having some difficulty getting in and out of a bath we plumped for a shower. I must admit when the pain is really bad I long for the bath. Hadn't heard about the shower gel so will have to investigate that. I did rest a little more last night but my back seems to be very sore today and very tired and lack lustre. Could do with an injection of energy. Take care.x

[jackie4ball]

I hadn’t heard of the shower gel either so got that and a spray oil which is supposed to help so we will see. Sorry to hear your husband is going through cancer as well when I was nursing it was my first ward and the patients we’re the loveliest. Hope you have a good day

Jackie x