Really just dont know what to do now

purplestorm

Hi all

Been a while since ive been on trying to put a brave face on things and hoping my condition will go away!

Im at an all time low again had 4 weeks of hell with my pains basically constantly everywhere barring my head and then the sweats and shakes started again so ive very little energy. I feel constantly nausious and the thought of eating makes me wretch (no im not preggers!) and im just generally down in the dumps.

Started Embrel injections which as of yet have not kicked in so not feeling any effects off them. Ive been to see my GP asking for help to try to reduce my symptoms and to get a repeat prescription for my oramorph (last one I got was july 2011) because I can only take oramorph for pain relief (once twice max during the night and thats not everynight just when I really cant cope anymore. i just put up with the pain during the day) i was given a 20 minute lecture on being addicted to the stuff and sent on my way and told to see my consultant on Monday (today) Ive tried steriod tablets and steriod iv drips, anti inflammitries, sulf, and nothing has even helped to reduce the pain or improve my inflammation levels.

Feeling no better Ive been to see the consultant who has now advised that i have inflammation somewhere in my body but they cant find it (is this normal has anyone had this happen to them) and i havent got atrthritis just inflammation and they still cant give me a diagnosis as to what is wrong with me. Ive been told to come back in two months and if im not feeling better he will try me on a new drug cant remember the name which i will have to have once a month in hospital through a IV drip.

Ive been in constant agony 24/7 with some part of my body hurting and please believe me when i say thats no exageration for over a year now and I dont seem to be getting anywhere very fast the consultant seems to be clutching at strawers and has practically washed his hand of me because as he has advised me its not arthritis (although they have been telling me it is) and well basically i really cant live like this any more, I cant look after my child, and I cant work which A) is annoying the dole who think I should be doing back flips down the corridor) and is now leading to financial difficulties paying loans I had while I was working.

I just cant beleive that in this day and age of modern technology that they cant find out where or why i have high inflammation levels like im the only person in the world to ever have had these problems like im some sort of medical marvel! Im only 5 foot inflammation doesnt have much room to hide in me! So basically they are treating me for conditions they keep telling me I dont have.

I really really dont know what to do now my consultant is the top dog in his field in my local hospitals but im seriously considering trying to get referred to another NHS trust does anyone thisnk this might help or should I just put up and shut up?????????

Please if anyone can give me any insight, tell me this is normal or just give me a slap please feel free to reply im just at a total loss as to what to do next.


Many thanks

Desperate Purple

x

valval

hi well it does sound as though they do not know what to do with you but that no help to you i think doc not helping is not on can you get refural to pain clinic they might be of more help. i think you should go back to gp (different one if you can) and tell them what doc consultant said about it not being arther and ask for help finding what it is good luck val

PatriciaH

Oh you poor thing I am in the same situation as you as regards pain over a long period of time with medications not helping. I have no RA factor or Anti CCP in my blood and haven't been given a definite diagnosis other than it is inflammatory arthritis. My consultant says that there are many types of 'illness' under the 'rheumatoid umbrella'. I am also going from one drug to another to see what works - not much!!

The ONLY things that have helped me have been prednisolone (steroids), celebrex and morphine. My Doc tried to take me off the morphine (oramorph) but the Consultant wrote her a letter and I now have it on repeat prescription. None of us wants to take medication and become addicted to it BUT we have to function to at least a basic level if we can. I really think you should see another GP who is more sympathetic or ask the Consultant if he will back you up so you can get the oramorph that helps you. It is so unfair that you have to suffer and it shouldn't be so.

Do you have someone who can go with you to your next appointment with the Consultant?? Two heads are better than one in these circumstances!!! You NEED adequate pain relief to be able to cope. We all do. It is a hard enough time for us isn't it??

The drugs that you have been given are all drugs that treat RA/Inflammatory arthritis including the one that is given by IV drip. They are the newer biologic drugs. It is such a hard illness to diagnose - mine took many, many years - but you should be treated with kindness and given the adequate medication to 'dull' your pain.

If you get along with the consultant then I think I would stick with him but try to impress on him the intense pain you are in and that you can cope with it no longer. If you feel that you haven't built up a 'rapport' with him then I would have no hesitation in being referred somewhere else. Do your research beforehand and try to find out where the sympathetic Docs are It makes a world of difference.

Take great care

Patricia x

barbara12

Oh Purple I do wish I could help you, I do know how hard it is to diagnose certain Arthurs,if it was me I would write everything down...a sought of pain diary...and then take it with you...sometime you feel has though you are banging your head in a wall, I am going through this at the min .
Please try to get across the pain you are in even if it means bringing on the tears, I am sure you have shed quite a few.
Please let us know how you get on xx

woodbon

Hi,
I can't add anything very much to the others, but I do know that I've been going round in circles for ages, trying to get a proper diagnosis and being sent from department to department.
Just carry on going to the appointments, as has been said, so many of these arthritic things do take are diagnosed by finding out what you have not got, rather than what you have.
Take care Love Sue xxxx