Struggling to stay positive: Hi all, having a day where... - NRAS

NRAS

36,574 members45,181 posts

Struggling to stay positive

mistymeana profile image
10 Replies

Hi all, having a day where's it's all getting to me today :( . Went for x-rays of hands and feet yesterday and had lovely caring gentle radiologists this time, unlike last time where I thought she must have been trained at the Marquis de Sade school of radiology! Got a call from NOAR this am asking me to go for my 20 yr follow-up to help their research. Brought it all into focus and made me angry again that the rheumy felt she could suddenly decide I didn't have any inflammatory arthritis after all this time and made me doubly determined to fight it and ask to be referred to my original consultant who is an expert in the zero-neg/uSpa field (many thanks for the tips earthwitch). A bit later I got a call from OT to make an appointment and after I put the phone down I fell apart. Just had another call from GP surgery saying they've been asked to prescribe amitryptiline by rheumy to help with the pain I have. Politely asked them to hang on to the script until I've seen GP next Tuesday to request 2nd opinion. Even crosser now as my understanding was that rheumy was waiting for x-rays before confirming her opinion on what's causing the increased symptoms but she must have written to my GP straight after our appointment last week. Result - fell apart again. I know tomorrow's another day and I'll hopefully feel a little better but right now life looks a bit bleak.

Written by
mistymeana profile image
mistymeana
To view profiles and participate in discussions please or .
Read more about...
10 Replies

Im sorry to hear this dont give up that script as amitriptyline is very good for pain as myself a user of this drug when the need arises and other people will tell you they have felt benefits too. This illness causes depression and i have had a bad patch will my health, it is quite feasible that you may have ra or oa with fibromyalgia, I have a diagnosis of ra and fibromyalgia, even if you have "just" and that is still a big just as it is painful tiring disease amitrypyline is one of the drugs of choice.

Hi - I take Amitriptyline for my RA quite often. It relaxes me a bit in the night and helps me sleep. I don't have Fibro or OA so I was prescribed it by my GP for nerve pain/ neuralgia when I was still undiagnosed but still take it sometimes - especially if I'm getting low level pain or starting to flare. My friend takes it for something completely unrelated too. Any way as Summer says it's quite possible to have both conditions plus OA - quite a few people on here seem to. Please don't panic or lose hope - but I think you should go and see your GP about the way you're feeling and explain the reasons. Also think you should look into being referred to a different consultant with an expertese in Spondyarthritis if possible. Tilda x

mistymeana profile image
mistymeana

Thanks guys - I'll go and pick up the script tomorrow. Just felt I was being fobbed off. The consultant I'm going to ask to see for my 2nd opinion is a Spondyarthritis expert so fingers crossed my GP will be happy to write to him.

cris1728 profile image
cris1728

Hi sorry you are feeling this way it must be really frustrating for you to be told these things when you are suffering. Don't start to feel depressed again as this is something else that is hard to deal with. I had depression 18 months ago and I am one of the least depressive people you cou;d meet. This was before I started with my current arthritic symptoms ( although I think that I have probably had my problems for longer than I thought )

keep your chin up and stay positive and see your GP next Tuesday and ask for your 2nd opinion.

crisxx

petalnumber2 profile image
petalnumber2

Hi Mistymeana, I really do sympathise with you. It's easy to fall apart when you are in pain, feeling tired and a bit down in the dumps, and a visit to whatever health professional doesn't go the way you think it might. It's also very frustrating when a doctor doesn't follow through with what he/she has told you. I too think that Amitriptylene has it's important place amongst all the other drugs we take, it aids relaxation and sleep and I usually find myself feeling a lot better the following morning. I only use it when I feel the need. My Rheumy said he was going to up my methotrexate dose from 20mgs to 22 and a half, and he would notify my GP, that was back in August and I'm still on 20mgs because he hasn't followed through. My aim next visit is to get my Rheumy to listen to my concerns about my painful ankles and the changes I am noticing, but I'm not holding my breath!! Take care Misty and hang on in there. Junex

I can understand your frustration - I've got a combination of OA & inflammatory arthritis with negative markers so at times I feel as though I'm imagining my pain & discomfort. I'm also waiting to have hand & feet xrays to see if there has been any change in the 3 yrs since they were last done.

I also take amytriptiline, it helps although sometimes it doesn't. I'd like to get the tests donw soon so that I can go up to the next level of drugs.

I have to pay to see my rheummy as he doesn't do a lot of NHS work, I don't mind too much as I trust him, the last rheumy I saw on the NHS told me I didn't have any form of arthritis!

allypal profile image
allypal

I have amitriptyline for pain, and if I take it at night I find it really helps me to get a decent sleep too, which can only be a good thing. It was also prescribed as pain relief some years ago when I had a lot of pain from a leg ulcer.

I hope you get the answers you want soon, though sometimes they can be a long time coming!

Ally x

oldtimer profile image
oldtimer

if it's any consulation, my most recent rheumatologist decided two appointments ago that it wasn't RA (I've had that diagnosis since I was 37!) as I had so much muscle pain at the time.

Since then I have taken in the photos of the classical swelling of my wrists and hands (which, of course, flared up after stopping MTX). No more mention that I should have another "label" since.

mistymeana profile image
mistymeana in reply to oldtimer

37 must be the magical age oldtimer - that's how old I was at initial diagnosis!

su2po profile image
su2po

Just reading this now, hope things have gotten better for you in the last few days. I know that feeling, I kept getting student doctorsa who told me I wasn't experiencing symptoms any more, I was sitting there thinking " I beg to differ sir, I'm pretty sure agony is a symptom" I deal with them in a passive aggressive way now, nod and smile then find another opinion. let us know how it goes.

You may also like...

Struggling for a diagnosis

Hello, I have been suffering with what I believe are all symptoms of an unknown autoimmune disease

The NHS is really struggling

On the upside I had an appointment over the phone with a physiotherapist and she was ace.

Struggling!

drug research. However I ultimately realised it was all too much to soon! I had not accepted the RA...

Confused and struggling

anymore. I have been given a phone appointment for next week with rheumy. My consultant retired a...

Tested positive for covid

actually feel okay apart from loss of taste and smell. I have my rheumatologist nurse calling me...