Tired,in pain no end in sight.: I really don't know... - NRAS

NRAS

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Tired,in pain no end in sight.

Snoopy60 profile image
12 Replies

I really don't know where to turn. I don't feel I get much out of my rheumy appointments they don't appear to listen to what I have to say. I've been on Hydroxychoriquine,methotrexTe (pills and injections), sulphalazine,naproxen all of which I have had reactions to. I am in a lot of pain ,constantly. On phoning the helpline at the clinic was told .. We're seeing you in June we'll try something else then which means waiting up to 12 weeks for things to work . I'm tired and in pain all the time, Ny advice please.

12 Replies
allanah profile image
allanah

Phone them again and tell them you can't wait three months. Or go see your GP and get him to either tell them u need to be seen earlier or them to give him advice such as give you a steroid jab to tide you over? 

Rest up your body is telling you it's overworking X 

anne999 profile image
anne999

Not sure where you live but is it possible to ask your dr to refer you elsewhere?.I had a similar experience got nowhere with my previous hospital, now being seen in london with positive experiences

sylvi profile image
sylvi

I shouldn't reccoment this,but i would go to A&E if your in that much pain darling and tell you you can't function like this. xxxxx

minka profile image
minka

TRY TO STAY AS CALM AS POSSIBLE ABOUT THIS PROBLEM I KNOW ITS BLOODY HARD WHEN U R IN THAT MUCH PAIN but you can make it worse

I would do as bellow phone your doctor and tell him the appointment is to long away see if you can get something in the pipe line to help you get an appointment.

and write down what u want to say to the docs or you might miss telling him somthing when you have come out

sorry to here about you problem regards john

Morning I do feel for you. Hubby was in horrendous pajn at one time and I was at my wits end. We changed gp surgeries. Further out to drive but worth it. They treat hubby like a person and changed his pain killers and upped his dosage of sulfazalazine? Other gp surgery made me feel like a real nuisance!! Sorry gotta go and help hubby xx

linda-5502 profile image
linda-5502

Hi Snoopy 60 after having 2 steriod injections in early March i am now back to "normal" in pain and oh so tired, just like having radiotherapy. I feel my husband thinks I put it on, if only he knew how I cover up a lot of what I am feeling. Today I want to have a really good cry and that is NOT like me this awful disease hope none of you feel like this 

Cathy777 profile image
Cathy777 in reply to linda-5502

A good cry can help but you need good help mostly.  I get depressed with pain and tiredness but I have kept on at my doctors and nurses and am now about to get one of the infusion drugs which I am so hopeful about.  Its hard work getting the right meds but you will get there.  Show your hubby some of the messages on here or read up on the condition.  If it were him in pain I bet he would be in tears too.

linda-5502 profile image
linda-5502

Thank you so much Cathy I do tell him of the posts here all he says is I don know what to do. I say just give me cuddles and xxxx but it is as if I have a "catchable" disease and he says I dont fancy you any more b............ men!!

eastbournelady profile image
eastbournelady

Definitely ring your rheumy specialist nurse helpline or specialists secretary & say pain too intense to wait could you have steroid inject to tide you over plus maybe an earlier decision on changing meds. However dont forget a lot of RD drugs do take a while to kick in working and they maybe monitoring your blood tests for how the drugs are affecting you. Good luck.

jane1976 profile image
jane1976

I totally empathise, until recently I thought RA treatment was quite good. Now I think it's dreadful, from struggling to get blood forms which don't even have inflammation markers to be tested, ESR & CRP & even when I have put them on the form myself or the path lab staff put it on for me, on finally getting my methotrexate book filled in with blood results the inflammation markers haven't been written in the book! I too have been suffering increasing pain & told my meds will be altered in a few months time when I have my appointment with RA doc. I'm on more meds than I have ever been on & in more pain than I have ever had! My appointment with RA doc is tomorrow, I thought it would never come, I'm trying not to get my hopes up too much! I've never had DAS score, most of my knowledge regarding RA has been through this site, which keeps me going!  How ironic that I got some info from NRAS saying I should be helping myself regarding my RA, it's not for the want of trying!! Totally disallusioned!!

jane1976 profile image
jane1976

Also GP won't "interfere" with Specialists treatment so, no joy there either!

Hi Snoopy60, I've got an odd type of rheumatoid disease that affects the connective tissue and have prolapsed six discs in my spine, according to my MRI.  The Rheumatologists cannot do anything much for me, neither can the Orthopaedic Surgeons but I have a cupboard full of different painkillers for different levels of pain and am horrified they have left you with nothing. When I get in severe pain and my small amount of steroid tablets and anti-inflammatories are not working, I get out my Oramorph, (morphine syrup.)  Before the Rheumatologist forced my G.P. to give me that, I would take very strong ordinary painkillers with alcohol as the pain was so bad, ( but I wouldn't recommend it obviously!)  Pain is not a static thing and some days I find it unbearable, others I cope. Surely, your GP would give you something to tide you over?  They can't leave you all that time until another drug works.  Make them listen.  My husband takes huge amounts of Tumeric for RA and he gets on alright without the DMARDs, but he takes Co-Codamol when he's in a lot of pain.

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