At the end of my tether.....

[Fionn_100]

I am just exhausted here with pain and need some advice. I have psoriatic arthritis and what I now know as bouts of fibromyalgia. My feet have been in agony for years and now my knees and shoulders. I am on consentyx which has helped my skin but my joints are still in a lot of pain, constantly.

During the pandemic I got so much all over pain I paid privately to see my consultant who said it was fibro and gave me a prescription for amitriptyline which did nothing for me. I can see now that was a fibro flare up, felt like a terrible flu which wouldn't shift but in time did. Because of the pandemic I could only speak to my GP via phone and she increased my longtec to 40mg X 2 a day. I had been on 30 X 2 for a number of years for arthritis pain. My rheumatology consultant then without discussing it wrote to my GP and said I was to be tapered off them completely.

I am now on 20 X 2 a day but I can no longer dress due to shoulder pain and the pain in my feet means I can't even consider walking. Up until now I somehow managed to get a walk a few times a week although all social life had stopped previously. The longtec gave me relief, relief so I could do basic self care, cleaning shopping cooking etc. Now I can't even do that. I haven't managed a walk in weeks, if I have a shower that's it I can't do that and stand cooking a meal. I keep telling them I need this relief just to look after myself, the basics but they just say the (British) government have said everyone has to stop taking them. They mention that maybe down the line we could look at tramadol. I had that years ago, when I was better than I am now and it didn't touch the pain.

I now feel what's the point in living like this. Taking that pain relief away has left me 100% isolated rather than 70%. I have lost so much weight as the thought of standing on my feet to cook is too much. I don't know what to do, I'm now spending more and more time just lying in bed as anything else will just escalate my pain and I haven't got enough relief to make it worthwhile. I have just turned 60 and I want and need to look after myself to go for a walk etc. Is this really what I'm left with, no relief and complete isolation ? I just can't believe they think this is more acceptable than 2x 30mg of longtec a day.

[springersrule]

I have psoriatic arthritis amongst other issues and my rheumatologist changed my anti inflamatories from naproxen to etericoxib. It has been a game changer for me so it might be worth asking about it. I take cocodomol as a pain killer as when needed - I have a box of 15/500's and 30/500 so can take a dose of 30/45 or 60 depending on what i need any given day. xx

[Fionn_100 in reply to springersrule]

I will look that up, it's not a drug I know so thank you for your reply.

[springersrule in reply to Fionn_100]

Your welcome. I hadn't heard of it til then but it helped more than any other drug combination I've been on. Good luck x

[Catr12]

I’m the same Fiona. No meds seem to work for me from my doctor and consultant. To be fair they have tried.The pain is awful. My pain is in my ankles and legs, swelling and nerve pain like broken glass going in to your body. There is new drugs called biological drugs. They are injections and many kinds of them. I tried one called adalimumab. They didn’t do much so my consultant is now about to start me on a new one

[springersrule in reply to Catr12]

I'm on the biologic Cosentyx like Fionn_100 and found it the best one for my psoriasis and psoriatic arthritis. It is a case of trying different ones to find which works best for you xx

[Catr12]

This group I find helpful

Facebook group

[Catr12]

This group covers everything

This a good group to

[Trenholm]

You have all my sympathy. I have neuralgia pain and gabapentin does nothing for it. When I asked for help my GP said I should try meditation to take my mind off it! I have got an appointment with an acupuncturist as friends recommend that. Perhaps you could try? Could you get help from carers? Keep on at your GP. There must be something you could have.

[Batty1]

I can 1000 times relate to your issues. I have been in a PSA flare for 5 years and it is absolutely the most insane life sucking pain anyone can imagine.

Im also on Cosentyx but it wasn’t helping my joints so about 6 months ago my Rheumatologist added Otezla to my Cosentyx and what a difference its the first time in 5 years I can walk 3 miles prior to the Otezla I couldn’t walk 3 steps.

Its also pretty common for people with psoriasis and PSA to have thyroid issues have you ever had a complete thyroid test done(TSH, FT4,FT3 , T3 and Antibodies). If your thyroid levels are messed up it can also add to your pain issues.

I also use a massage gun I got from Amazon $50 works great on stiff muscles and tendons.

[Fionn_100]

Thank you everyone I appreciate all your replies. I'm still trying to understand this issue doctors seem to have, recently, with drugs like longtec. I don't think 2x20mg per day is that bad, it gives me some relief enough to do basics like shop cook a little etc things you HAVE to do. They would rather I took a cocktail of tramadol, co-codomol, ibuprofen, amitriptyline, anti depressants, stronger sleeping tablets AND no exercise whatsoever, for some reason they think that is better. I don't understand this thinking. My feet are completely destroyed with arthritis a quick glimpse shows anyone the extent of damage not one single toe isn't completely twisted and ruined, there is no anti depressant in the world that will help it ! I have tried everything over the years and the only thing that has ever given me relief from pain, relief so I can then do things to look after myself and even occasionally walk is longtec . I have requested a referral back to the pain clinic and shall see what they say...... but I'm beginning to lose hope. The pharmacist at my doctors has also suggested I go to a wellness group mindfulness at the local leisure centre which just shows me they are not listening - IF I manage to get up shower and travel into town it will be to get in food and necessities, I can't even get to the leisure centre ! I hate the way they just don't seem to listen and actually find it shocking how much they push anti depressants. I am not suffering from depression I am suffering from badly deformed arthritic joints and the associated pain.

Anyway, thanks for giving me an outlet to vent my frustration, I feel for you all it's not a great boat to be in , take care everyone

[B-B4]

Agree - you don't feel the people who are telling you what you need are living in the same World as u - deepest sympathy! x