How does your doctor respond to your arthritis pain?

Starburst

I have Rheumatoid Arthritis. Since starting MTX, the swelling has hugely reduced but I still suffer with morning stiffness and varying levels of pain. Upon examination, my rheumatologist told me that my joints were not swollen and I'm "always tender and rarely present with swelling" so it's likely I have Fibromyalgia. I felt fobbed off because I 'only' (haha!) get pain in my affected RA joints and I don't have any other Fibromyalgia symptoms. It felt like she was diagnosing me because she doesn't know what to make of my pain rather than her genuinely believing I have this syndrome. I've noticed that both the rheumatologists I've seen tended to brush over my pain issues and only look at the clinical picture. This led me to wonder how other people feel their doctors deal with their pain and how they respond to them. I'm interested in opinions from people with osteoarthritis as well as inflammatory arthritis and any other types. As pain is subjective and personal, it's a tricky topic. Any thoughts?

dreamdaisy

My doctors have always considered the pain to be part-and-parcel of arthritis and for me it is. My OA is there as a result of damage caused by the PsA (which also hurts but in a different way) and as we all know there is not much to be done about pain apart from taking the dullers (which also come with their own troubles). No med I have ever taken has reduced my pain to any noticeable degree apart from one (infliximab) and those meds include humira, meth, enbrel, leflunomide, cyclosporin, oral steroids, Celebrex, naproxen and diclofenac. The phone's rung, I have to go. DD

dreamdaisy

Right, I'm back.

I think that one of the biggest problems we all face is living with constant pain. This can range from a mere twinge here and there to something raging everywhere and I have always found my doctors to be aware of this side of things. All they can do is prescribe pain relief, and they have, but I have yet to find a doctor who really understands what it is like living with pain. You have pain in your not-so-swollen-thanks-to-the-meth joints because you have RA. It could be that there is a small amount of joint damage too (I don't know 'cos I'm not a doc) and that will hurt. Our joints are not designed to have some of the very high levels of fluid that our bodies pump into those narrow little spaces so it makes sense that stuff gets stretched etc and will therefore hurt even if the fluid has beem removed or is no longer being produced. I've never met a GP or consultant who has RA or any other form of arthritis, but one of the rheumatology nurses was an RA-er and she totally got how tough it can be. Her meth worked well enough for her to hold down a full-time job ijn the rheumatology clinic but she too was in constant pain.

Pain is very subjective, a mere twinge to one person is appalling agony to another. One thing is for sure though, it's here and we have to deal with it as best we can. DD

valval

to be honest the do there best but it so hard as dd says the pain meds only dull the pain and as we all feel it different it hard for them to deal with distraction one of the better ways but my rhummy told me off the other month for not taking enough co cods he said to keep the pain under control but it not him having to take the tablets so i take them when it is so bad can not sleep and exercise when can as this does help so long as you do not over do things goodluck val

barbara12

Hi Starburst
You would love my GP...I go in to try and get over how bad the pain is, and could he give me anything for the very bad days to get me through it, and he came back with..well I had twinges in my back this morning and had to take ibuprofen, I was gobsmacked, but thought to myself, how on earth can he understand my pain unless I go in screaming..and this isn't me.
I do hope you get some answers and relief very soon x

Nicchick

Until recently I would have said that my GP totally understood my pain but I think that even she is getting fed up with me repeating myself! In the past she has been awesome and prescribed exactly what I needed and trusted me to adjust the combinations as and when. Because recently I have been getting so upset due to the frustrations I'm feeling with the hospital right now she wanted me to take sirtraline along with the tramadol and I don't want to, this has annoyed her and although I do know sirtraline would help the pain receptors a little part of me feels that it would add fuel to the 'it's all in the head' idea that people appear to have of arthritis.

I'm finding everyone's attitude to my arthritis a bit strange right now anyway so it may just be me being a bit sensitive...I'm waiting to go to the pain clinic right now before I make any big decisions about pain relief. On my last visit to the practitioner nurse I saw two of them, one who is dealing with me right now and one I saw a lot last year. The first told me that 'we will get this sorted' and the second said 'you will probably never be free of pain'

Even my OH who has RA admits that he can't imagine my pain nor I his.

Nic x

Soretoe2

On the whole I have had good doctors at hospital and also my local surgery. Mind you I've had a few over the years, I thought should have chosen a different profession.
However I don't think most of them really have any real idea just how awful contant chronic pain is. Also they don't really have a true consept of how difficult putting up with the side effects of most medications is either.
Due to maternity leave/holidays etc; I often have to see a doctor that I don't really know. Some years ago I got labelled 'non compliant' somewhere in my notes, as I went through loads of different types of meds and gave them all up due to the side effects. I am always unfailingly polite but will say if something doesn't suit me. Some doctors have taken this rather personally and seem to think that what they prescribed is the bees knees and think that my pointing out what to me are serious side effects are me being difficult.
Even my surgeon earlier this year said 'I hear you don't like medications'!
Not true, I'd just like one that works and doesn't make me comatose or vomit! Am I asking too much?
I have an appointment Thursday afternoon to discuss how I'm getting on with my latest meds. The truth is I hardly take them, despite them being the best combination yet and being in terrible pain, mostly lying on the bed all day and spending most nights listening to the radio in our spare bedroom. All due to the side effects that my doctor thinks I'm making a fuss about! I'm dreading it as I know it'll be the same old same. Or maybe this time I'll just wimp out say' these are ok, which isn't strictly true.
Several of my arthritic friends say they have the same reaction, so I know it's not just me.
So if you have a great doctor who genuinely understands deep searing pain hang on to him/her, worth their weight in gold.
I love this forum, you make me feel liberated, so I hope I haven't over done this post.
A pain free day to you all. Joy

stickywicket

I've always felt that my rheumatologists dealt more with trying to hold back the disease than dealing with pain. Their response to pain is usually a jab in the backside - which helps.

My GPs are brilliant. They know I don't like taking any more dullers than necessary so, if I say I'm in pain they really sit up and take notice.

scattered

My rheumatology team don't deal with my long-term pain management. As far as they are concerned that comes under the remit of my GP. They will deal with flare-ups in affect joints but that's it.

My GP is just as frustrated as I am, I think. Trying to find med that a) does something, b) has as few side-effects as possible and c) I've not become 'immune' to is difficult. As such I've come to accept that I'm always going to have pain at some level. I take enough lower strength pain-killers to take the edge off and save the big guns for when I'm in real agony.

I think rheumatologists just take it as given that pain is there all the time. If one joint is much more painful than the others then it may warrant further investigation but otherwise there isn't much they can do clinically.

I hope things improve for you though.

Nicchick

Oh....and Barbara your GP sounds a lot like the helpline nurse who when I asked for advice about the bad reaction to an anti-inflammatory (bleeding from everywhere!) proceeded to tell me how she couldn't take ibuprofen either...I'm ashamed to say that at that point I couldn't have cared less what she could or couldn't take as she had left me like that for four days longer than necessary due to her not doing her job properly. Grrrrr!

Nic x

frogmella

I wonder sometimes how much it is down to how we appear. We are so used to being in pain all the time and that is our normal. So maybe we don't come across as being in pain. I know my (ex) surgeon underestimated my pain massively. My GP does know me well by now (how nice!) and she totally gets that when I say I am in pain I really am!

JuliaHod12

In my experience my GP has persistently failed to understand the need to take pain meds which suit a particular lifestyle, for example i cannot continue to take meds which render me almost comatose on a daily basis whilst trying to hold down a full time job!
On the other hand if I were not employed I may be able to cope on such meds since I would not have the added pressures of getting up each day! :-)
I have struggled with various combinations over the past few years, none of which have had much effect, but the best of which have given me a "brain fog" such that my memory is knackered as well as my knees!
At my last visit last week I was prescribed Tramadol for the first time.........so I shall be trying that during my phased return to work!

frogmella

Yes, that sums it up nicely - I can't work on the meds but I can't work full time without them!

stickywicket

It is, I agree, a Catch 22 situation but there is a limited range of paindullers and we all react differently to them. GPs can, and should, ring the changes if what we are taking doesn’t work for us or has too drastic side-effects but they don’t have infinite options and can’t really be expected to match up our meds and our life-styles. That’s up to us. I admire everyone who manages to combine work and arthritis but it was never an option for me after my second child was born.

JuliaHod12

Agreed sticky, however it seems to me that my GP would rather prescribe the cheaper pain dullers in the first instance and then work up to anything else more robust, regardless of what my needs are at the time..........maybe cynical, but thats just my opinion.
I believe they are safeguarding their funds (and rightly so) but dont always listen to we patients.
I also believe that they generalise a tad too much and dont always treat us as individuals when prescribing..........again just my opinion.
An example of this is when i had chronic migraines which were worsening daily....i was prescribed every kind of pain duller until i was eventually given high dose anti epilepsy drugs (Epilim) to fight it. I wasnt referred for tests despite me asking, the eventual result being i had an acute attack of angle closure Glaucoma, resulting in loss of eyesight .........because my GP had not seen anything like this in GP for 30yrs and had generalised!
I appreciate they are not perfect and mistakes will happen, but i think they are duty bound to listen a bit more intently in the 5 mins we see them!

dreamdaisy

I am very fortunate with one of the GPs I see at our surgery, she does get it but also cheerfully says there isn't much she can do - and she's right. For me pain is a fact of life and like many of my other facts I can't change it. I would love to be taller with long lustrous locks, rich, small-boobed and slimmer. I can lose some more weight (and will) but the rest of it? Dream on Daisy!

Starburst

Interesting thoughts, thanks for sharing everyone.

Susiesoo

A VERY BIG THANK YOU - to Starburst for starting this thread and to everyone who has responded. Somehow the comments have helped to clear my muddled thinking somewhat. To know that a Rheum Nurse with RA was in pain herself was enlightening and I feel a sense of relief. Because everybody is so different and responds to meds so differently I have trouble trying to understand if my problems are "normal" (whatever that may be).

I, for one, find this forum so helpful. There is a wealth of knowledge and experience that would be hard to find elsewhere. I wonder if those of you who contribute so much have considered writing a book?! It would be invaluable to so many.

I have an appt with Rheum Nurse later this afternoon and after 2 difficult appts with Consultant I am not looking forward to it. I dread her suggesting that I increase the MTX as the higher dose made me feel so awful previously. I'm not sure that the joints are as good as they should be on MTX and last time I saw her she said the alternative she could put me on would mean no alcohol at all. I don't drink a lot, but do enjoy the odd glass now and again and would miss it.

However, I do feel a little easier about seeing her after reading this wonderful thread and I really do thank you all for sharing so much.

With very best wishes to you all, Susie