So... After few years of recurrent references, I finally agreed to go to the pain clinic. To schedule a meeting that is... Three clinics in the area / one is fully booked, another has a free slot in October and the third one has sent me an official letter. After a month of repeating calls. Scheduling a meeting. In mid June. Not sure if to laugh or to cry. I though that pain clinic is for people that deal with pain. Here and now. Not in 3-7 months... not even sure how to proceed... Flying to another country somehow seems like a faster option to get a diagnosis...
This is crazy isn't it?
do you have a diagnosis of RA?
what meds are you on?
Where are you located?
I am so sorry. That sounds like docs/clinics here where I live. They told me it would be a 36-48 month wait to see a Rheumy.....4 YEARS.....I would likely knaw my own hands off first. I agreed to travel 6 hrs to get in in 6 months. Is something like that an option for you?
Yes I have a diagnosis of RA. Otherwise? What would I do here?... Off meds. Bad side effect from Humira.
Thanks Lisa. I can do with driving few hours. Haven't checked my options yet. It's just that this is insane in my opinion. The pain clinics are small so patients on hold is their best strategy? Will see what I will do about it. Probably nothing. Don't really believe that they can do anything anyway. Crazy really...
Sorry!- bit of a daft question on my part.
But I haven't heard of anyone with RA going to pain clinic- sorry to hear the humira no good- I guess you are running out of options.
If you are in a lot pain it probably is worth giving it a chance. Even if you don't need pain meds all the time my theory is better to have it and not need it than to need it and not have it. Until this past month I did not think I would even consider any med the rheumy might give me but I hurt so much most days I feel now that quality of life is more important. It is ridiculous what some of the waiting times are. I feel for you.
Amma are you in the UK ? Surely you have to be seen faster than that under the patients charter if you are ? Who is making the referral - GP or RA specialist ?
Not in the UK. The referral was originally made by my regular RA specialist, but she had a problem with the computer that day (more accurately with my account, as I already saw 2 other RA specialists two successive quarters so the account was locked under the last name. The fact that she was OOO because of a maternity leave or that they didn't give a satisfactory answer didn't matter - she could not access my account... ) So she gave me a request to my GP to access all data and make a proper referral on her benefit. Which he did not do, obviously, instead giving a short summary of the condition, to which I added my records from few months ago and sent it together the clinics... I think that they did not read my medical history... Or that the fact that the final referral was made by a GP played against me... Or that I did not include two supporting letters from two other RAs that I saw privately... Or maybe they are really busy... This way or another I will make few more calls... Wishing luck to myself...
Hope you get something sorted.
in the uk you would be moved to another biologic to try- unless there are underlying reasons why not. It s a hit and miss thing where one biologic works for one but not another. Can't help feeling the root cause of the pain needs to be tackled? Realise you had a bad experience with Humira.( anti tnf)so maybe that s put you off meds. But there are quite a few other biologics, some of which work in a different way to Humira.
all the best with the phone calls and battling your way through the medical world. It isn't t easy- especially when you re in pain.
A phone call to the clinic year... and??? Nothing... No early appointments. One clinic had been shut down. Another is full. I was kindly advised to go to an orthopedist for gaining early additional info to bring with me... Would laugh had it not been real and sad... As for another biological - yes I can start one as yesterday leaving aside some minor problem that I still have from Humira. Humira side effects were horrible. I am afraid to try another one. Plus? My rheumy for the past 10 years said the she does not think that another biological will help. Because I have an abnormal case... That much for being optimistic for today. Going to see another rheumy next week. And another one in May. Low expectations. Thanks for your comment. It helps to know that someone hears you. Drs obviously don't....
I just hope the next rheumy can be more positive in trying something else or understanding your condition better.
i can see your bad humira experience has made you wary, but some of the newer biological work in a different way to the anti tnf s eg tocilizumab has had good results.
anyway- keep us updated and hope you find some light at the end of the tunnel
Are you in Canada by chance?