Not being a patient patient!!

stremlett

I just wanted to say how much help Arthritis Care has been to me. First of all it was nice not to feel so alone, I borrowed loads of the tips to make life easier, I was guided in the direction of speechnotes.co and I looked up medications to get an independent view.

I saw the rheumatologist in Mid December. Because there are long waiting lists for each test and each test leads to another test, I'm still waiting for a diagnosis. To be honest when it comes I will probably doubt it because my symptoms now bear no relationship to what sent me to see him in the first place! He did prescribe strong painkillers, discovered that my vitamin D level was desperately low (and that alone could have caused my symptoms) and also confirmed that I have bilateral carpal tunnel syndrome. He has nothing to say about the arthritis so far. My left hand is contracting and I cannot open it up but I'm still waiting for my physio assessment which seems crazy.

I was fortunate last month when I popped in to the Arthritis Care drop-in at Queen's Medical Centre. I was lucky that the organiser was kind enough to spend a lot of time with me answering my 101 questions. She also said it took more than a year for her diagnosis to be confirmed.

Overall I am definitely feeling a little better and I'm managing to get to the pool twice a week for gentle water exercise, I am knackered when I get home but it's so worth it for the pain relief.

May we all have the best week we can given what we have to manage :-), sue

dreamdaisy

Arthritis demands patience from us patients and that is always a challenge! You mentioned your left hand is contracting - I don't often recommend googling stuff but are you aware of Dupuytren's? I know that can affect individual fingers but no more than that. As for the carpal tunnel I had both hands done at once - now that was an interesting experience! I take Vitamin D tablets (with added calcium) on a daily basis throughout the year in the hope that every little helps.

Diagnosis can take time, the human body is a weird and wonderful thing (in my experience weird takes the lion's share) but at least steps are being taken to rule things out rather than in. I too felt very alone until I found AC, I was the only one in my peer group who was bothered by this nonsense so to find others in similar boats was a revelation . Please keep in touch and let us know how you progress, I have the comfort of knowing what's what but I do recall the uncertainty of no-one being able to tell me what was going on. I wish you well. DD

stickywicket

Patience never came easily to me (and I can almost hear my family and friends agreeing ) but it is a necessary part of most medical stuff especially arthritis. As DD says, much has to be rules out before stuff can be rules in and, although we patients would much prefer to have all tests at once, that would be poor use of NHS resources as whether or not subsequent ones are needed will depend on the outcome of the simpler early ones.

Meanwhile, we are all here and all in the same creaky boat and probably, at any one time time, many if not most of us are waiting for some appointment or other.

stremlett

Thank you for your kindness :-)

OutdoorMaz

I totally understand how you feel. I find the frustration and being patient part of this harder than the pain sometimes. I inherited my lack of patience with anything and everything from my Mum and she will be the first to admit it!!

I also find the lack of anything being joined up and the waste of resources hard to deal with as well but I guess that's how it is so I make the best of it.
I had a steroid injection in my shoulder on 5th April and my physio appt to go with it is 7th August !! I despair.

Like you though I find this forum hugely helpful and have picked up so many tips. It's also good to know that when you've worn down all your friends and relatives with it all there is always someone listening that can relate to what you are saying!!

Maz x

stremlett

OutdoorMaz wrote:

I totally understand how you feel. I find the frustration and being patient part of this harder than the pain sometimes. I inherited my lack of patience with anything and everything from my Mum and she will be the first to admit it!!

I also find the lack of anything being joined up and the waste of resources hard to deal with as well but I guess that's how it is so I make the best of it.
I had a steroid injection in my shoulder on 5th April and my physio appt to go with it is 7th August !! I despair.

Like you though I find this forum hugely helpful and have picked up so many tips. It's also good to know that when you've worn down all your friends and relatives with it all there is always someone listening that can relate to what you are saying!!

Maz x

Yes Maz, It's infuriating, but, I suppose things could be worse. I had a private appointment with a rheumatologist ( cost £500 for forty minutes with the great man plus three blood tests). Diagnosis was more or less " you are not very well". Also an esr result of 2 when the one taken a week before was 45 and the week after was 43. Aged 69 with an esr of 2? Not likely!! Thank goodness the national health guy was much better.

In the end nobody will care about our health as much as we do so it's down to us to look after ourselves hopefully with the kind care of professionals. Have a nice day, Sue