Nothing helping

cox1058

Hi there - I'm seriously getting so fed up with being in constant pain. I feel totally written off as it was a first contact practitioner who said I had osteoarthritis in my hips, knees and shoulder. I've had a terrible back for about 15 years but at no stage has anyone ever suggested an x-ray, scans etc. I've tried co-codamol, naproxen, etoricoxib and am now up to 50mg amitriptyline but nothing is helping with the pain. Has anyone had any joy with amitriptyline? I've been on it for 2 months, starting at 10mg and slowly building it up, but surely it should be having an effect by now if it's going to work. I'm convinced I may have Fibromyalgia or something - my daughter has this and nothing works for that either. People keep telling me that if it's arthritis, then the anti inflammatory medications should have helped??

PJoanne

Hello @cox1058

I am in a similar situation, living with constant pain. I am taking amitriptyline for pain but the dosage has started to fail, so hopefully my GP will prescribe a higher dose, fingers crossed. I've been referred for CBT counselling before referral to a pain clinic ( I have been on the waiting list for CBT since the beginning of the year). It is difficult to cope with. I have found distraction (volunteering, jigsaw puzzles etc) helpful.

Can you ask for a treatment review with another GP?

Here is some info about amitriptyline, it can take a while to kick in.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/amitriptyline/

best Joanne

cox1058

Thank you Joanne for your reply. May I ask what dosage you are currently on please? I've been taking it for 2 months now but have gone from 10mg daily to 50mg currently in gradual increments. I know it says it can take 6-8 weeks to work, but I don't feel any benefit from the pain side of things at all yet. I'm wondering whether I need to be on the 50mg for 6-8 weeks, as that has only been about 2 weeks so far. I've been told I can go up to 70mg…I've yet to speak to anyone who has said it helps with the pain, only that it helps them sleep longer. I work full time, but it's a desk job so although it probably doesn't help the situation in having to sit, I'm very grateful that I can work from home. I can't stand more than a few minutes and walking more than about 20 paces is a no-no, so I have to be grateful for small mercies in that I can still earn an income. I do try and knit or cross-stitch, but it's so hard not to think about the pain when every time you have to stand up or walk, the pain is so intense. I hope you find the counselling of benefit. Thank you for taking the time to reply. Best wishes x

Robby4070

I’m the same constant pain. I have PSA & Osteoarthritis. I take pregagbalin, this blocks the pain signals, started taking it just on a night as I have a nigglie sciatic nerve. I now take a tablet in the morning too, as I can’t take anti inflammatories anymore. I take 8 paracetamol a day, which doesn’t do much, but co codamol doesn’t agree with me. I have tramadol as a back up.
I’m going to see a pain specialist at the end of the month, but I’ve had to ask if I can see one, & I’m going private, but that’s only for the appointment, after that it’s NHS. Rheumatology wouldn’t give me an intramuscular steroid injection, even though I’m flared, they said as I was over 50 ( I’m 53), & post menopausal it wasn’t wise, I should think of my bone health, so but they offered no alternative! Like you I feel written off

cox1058

@Robby4070 I'm sorry to hear you are having similar issues. I'm 60 in a couple of weeks, but feeling like 100! I think I'm more miffed because I have had my back issues for so long, and now all these other issues which are really limiting my mobility…I only leave the house once a week as a passenger in my husband's car and just walk a short way round somewhere like B and M clutching a trolley for dear life. By the time we are home, everything is so painful, I'm just chair-bound! I've never been offered so much as an x-ray and I really feel like something else is going on. Most people comment on noticing a marked improvement with their arthritis condition in the warmer weather - this has not been the case for me. If anything I feel I am progressively worse over recent weeks. I know I am overweight and this doesn't help but I am convinced there is something else going on and that is why medication like the NSAID's just don't help. I can't see any swelling in any of my joints - it's just constant pain when I am awake, but the minute I move my legs in bed, the pain is all down the front of my legs as well, almost like it's muscular as well. I just feel like a guinea pig with all the meds, none of which have helped - if anything, they just give me additional issues like dry mouth, swollen ankles, heartburn…

shacklock25

Hi. You must insist on an x-ray. Something is clearly going on. Ideally, a MRI scan as well. Your life is being badly affected so it's time to get pro-active and make the doctor take you seriously.. Good luck.

Moira

I had similar experiences. I cling to a trolley for dear life and my hiking and dancing days are far away now.

We moved to Wales 7 years ago and I just discovered 2 months ago that the GPs hadn't sent for my past histpry and didn't know I had been diagnosed with immflamatory arthtis and had been treating me like "an old biddy with a wee touch of osteo!"

That is until a locum 2 months ago asked me for my "arthritis story". She was shocked that they didn't have my notes of being on Methetrexate etc. (I had kept all my copies of records) Aparently there is a waiting list of 2 yrs + here in Wales to see a rhumatologist, which she said I should have seen as soon as I moved here.

She suggested I make an appointment to see one at our local Spire Hospital. I did and saw a wonderful lady rhumatologist who dignosed me with Fibromyilgia as well as imflammatory/oesteo. You may not need scans and nothing will possibly show up unless there is an oesteo problem. There ar "trigger points" for Fybromyiligia, especially on the back and shoulders. I also now have tablets to deal with my sleep problems (up 3+ times a night to wee and very thirsty). So…….. have an NHS appointment with her next month at our NHS hospital. It cost £250 for that 1/2 hour appointment but it was worth it. I feel a bit guilty at jumping the queue but really couldn't go on much longer with the pain - even with pain killers (although I am careful with them as you become hooked), physio etc.

If you aren't already doing some meditation/mindfulness do, and if necessary ask for CBT help. But there may be a waiting list. I also do Tai Chi for older people at a local class and find that helps.

Hope you can get to the bottom of it and find strategies to help.

Baloo

@cox1058 alas, I am an optimist, and to me, there is no such thing as nothing helping. Arthritis does strike me though as being not just weird and hard to understand, but also quite complex being in multiple joints in multiple ways and so on. It takes a lot of figuring out, but we end up knowing it well.

I launched into Tai Chi from YouTube videos and even though I don't do the moves, the principles seem exactly right. Slow gentle movement at breathing speed that gives you a better and safer feel for what is going on. ☯️

Fibromyalgia on the other hand seems to be on a different planet. My friend had fibromyalgia and where I am still at work, my friend ended up leaving, as if it was a very isolating or very different malady. I feel that loss very keenly. Don't go away. Are you sure fibromyalgia is what it might be.

cox1058

@Baloo No, I'm no expert so not sure that it is fibromyalgia, but my daughter was diagnosed with it a few years ago and every time she sees a specialist or doctor, they ask if anyone else in the family has it as it can be hereditary though the condition itself is often sparked by a traumatic event. We have so many symptoms which are alike and I've had other issues since I was in my 20's which could also be linked to fibromyalgia and for which I have never received a firm diagnosis. All I know is that there is nothing helping me - I've been put on and off various medications which are supposed to reduce the pain and discomfort of arthritis but they have done nothing. I'm now on Amitriptyline which is given at lower dosages for pain relief. I've gone from 10mg to 50mg thus far and although it helps me sleep for longer periods at night, the pain is actually getting more intense in the day. I used to be someone who people told off for not being able to sit still, watch a film and just relax - I was always saying 'ooh, I must just nip here or there, must just go and do this etc'. Now, it's a struggle to move from one room to another and I dread standing up because the pain is severe…I can't walk more than a few spaces without needing to hold on to something. Going from being relatively active to this, is just something my mind is having tremendous difficulty coming to terms with…

Ellen

@cox1058

I just read you post and wondered whether you'd ever read this?

https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

Apologies if you have it just might be useful.

Best wishes

Ellen.

cox1058

@Ellen Thank you so much. I had not seen this, so appreciate you sharing it, though much of it I am familiar with because my daughter has the condition. I feel it could be written about me as so much of it is how I feel, and I can relate to most of it. Getting the Drs to diagnose it is another matter. I'm sure because of my age and weight, a diagnosis of arthritis is what they feel most likely, but my blood tests all came back fine, and I've never had scans or xrays to confirm it. I'm frustrated because I've been put on many different medications, yet none of them have helped so far. People I know who have arthritis have said how the anti-inflammatories have really helped them - it just confirms to me that maybe it's not arthritis in my case and that is why nothing is helping. All I can do is plod on…thank you x

Baloo

@cox1058 Yeah. not really. If its arthritis in the joints the arthritis would respond to nursing the joints. If its Fibromyalgia in the nerves, the Fibromyalgia would respond to nursing the nerves. Bad luck if you have both maladies thats for sure.

Bryony

As the first contact physiotherapist has said you have osteoarthritis, then ask to see them again and ask about having x-rays done to confirm if it is osteoarthritis and find out the stage it is at. Blood tests will be normal if it is osteoarthritis. Osteoarthritis has traditionally been classified as a non-inflammatory arthritis, (or degenerative arthritis) though many do have some inflammation with it, but not to the same level as in rheumatoid arthritis which is classified as an inflammatory arthritis.

Many people with osteoarthritis don't get pain relief from anti-inflammatories. I don't.

anneka87

@cox1058 I am currently awaiting diagnosis and been told I likely have fibromyalgia. Though I was convinced it was an inflammatory arthritis. I am on amitriptyline 50mg and I have found it helps me to sleep but does very little to help the pain in the day.

I have found nsaids helpful for my joint pain. However, have had to switch to topical due to reflux.

I understand your frustration. Chronic pain is awful, and trying to get a diagnosis or treatment plan is so difficult. My GP was reluctant to diagnose or refer me anywhere and just kept prescribing opioids. Now been told I shouldn't be taking them because they're addictive...well duh! 🙄 But they haven't offered an alternative.

I have ran out of energy and cannot be bothered to fight for help anymore,. particularly when healthcare professionals just don't seem to have the time for you.

I really hope you find something that helps. Perhaps ask to be referred to a pain clinic? My colleague states this was so helpful for her.

PJoanne

Hello @cox1058

Sorry for the delay in replying, I am normally only on the forum once a week! I'm on 10mg. Sometimes I take two if I've had 2 or 3 really bad days, sometimes that helps and sometimes it doesn't. Like some of the other comments for your thread I feel that it is likely to be a combination of fibromyalgia and nerve pain caused by spinal issues. It's strange I have all the symptoms of arthritis (painful, stiff and swollen joints) but bloods and xrays are within normal ranges. The constant pain is very hard to deal with.

best Joanne

cox1058

Thank you all for your responses.

Blood tests for me all came back as normal with the exception of cholesterol which was only marginally elevated, not sufficient enough to worry about it or to have medication, so that's something I can hopefully manage with diet.

@anneka87 - I like you, feel there's little point in battling with the drs. I've not mentioned it before but I also have an anxiety disorder that I have battled with for 32 years! It's left me not really able to mix with people. I'm very fortunate that I can still work and after working for myself for 12 years, one of my clients offered me a role with them which I now do, but again from home. This anxiety problem means I really struggle to go to supermarkets etc anyway, and I can't eat out or even have a coffee out, or at someone's home, so I'm a bit of a hermit now anyway. I am probably the world's biggest baby when it comes to all things medical and dental and I wonder if that is why my Dr has not suggested scans, xrays etc., because they know how badly I struggle with going anywhere new or having any procedures done. The anxiety disorder alone is like having a demon within me that rears its ugly head from time to time and I have missed out on so much that others take for granted. Now coupled with this degenerative issue with my joints/muscles/back, whatever it is, I am virtually house-bound. I've not pushed for an operation because whereas others would want it to give them their independence back, I would dread the actual procedure and if it gives me less pain that would be fantastic, but it wouldn't mean I can get out and about because the anxiety problem means I wouldn't want to go anyway. Sorry for droning on, but I just wanted to let people know that I'm a bit different to most other people in that I don't actually want to push for an operation, as bad as that seems - I would never be able to go through with it. I'd be reasonably happy to take the medication if it was something that actually helped. I've been on beta blockers for over 30 years for my anxiety - they just don't seem to be able to get it right for whatever this other issue is…..