i had swolle stiff joints off the knuckles in my hands but this week its the worst its been sore swollen finger like very fat chips GP said cant help RA nurse told me to ask GP for steriods wont let me have them had to ring RA nurse twice finally my consultant opening another clinic thursday as he use to have 4 clincs know down to 1 clinic can never get in my hands getting to the point wont be able to use them that hot itchy cant stand much more pain as had a toes and tendons done and op went wrong in constant pain cant get shoes on ot walk proper muscel spasm sit on a low chair cant get up no power in leggs cant push on hands wrist got rods in wrist and impengement on both shoulders they cant be replace as my RA is in tissues joints im housebound cant walk stand for long cos got excuesating pain in feet nerve damage and scar tissue arthritis in them im so sick of pain no relief at all morphine orahmarph co-co-damol anti inflammortories and RA tabets fibro ME and IBS vicous cirle
Chrissie, this is most upsetting to read!!! So, let me understand something... you have been diagnosed with RA and you can't get STEROIDS???? What about other treatment??? Are you seeing a Rheumatologist regularily or is that the clinic that you said closed from 4 offices to 1 and it is taking a long time to get in?
I am NO DOCTOR, I have also only been diagnosed with RA for a month (though suffering mis-undiagnosed for five years), BUT my father had it and other autoimmune diseases and my grandma and my cousin and my daughter was sick with other things and eventually died. I tell you this to qualify me as a "lay person" to give you some advice: GET YOURSELF MEDICINE any way you can. I have heard on other forums that you can get medication less expensively in India or through India. I know there are many Indian people living in the UK... perhaps you can find someone who works privately to bring in prescriptions from India? What about appealing to whatever government agency oversees medical care in the UK?? You must advocate for yourself and insist. Write letters telling them that your condition continues to deteriorate while they wade through their red tape and if you are permanently damaged by their delays or, worse, die because of them, you or your family will puruse all remedies provided under the law. Lord have mercy! The things I read on this forum about delays in care are ridiculous.
The other thing you might try is to give your location... generally - like the city (or whatever they are called in the UK) where you live and ask for recommendations for Rheumotologist with whom others on this site have had good experiences. Can you self-direct to another doctor who will do his/her JOB?!!?!!
I am so sorry you are suffering! If you were in the US, I would write you up some legally threatening letters to help you but I don't know your system over there... that said, you MUST have some appeal rights!
Im so sorry that you are in so much pain, and i can see your doctors arent helping you manage your pain and disease.. The. R A dictor is the one to prescribe a prednisone pak ( usually 10 days prescription) so not sure why your RA nurse is directing you to your GP unless this particular RA doctor is afraid of how they will effect you. You are so right about the overlapping of the other diseases you have such as IBS and Fibromyalga..you have been through way to much as your diseases dont appear to be managed.. You must be very proactive and do what you can to build up your immune system, by not eating things like gluten, dairy, sugars, pork and other highly inflammatory and allergy type foods...and making sure you take magnesium glycinate, calcium, D3, a good multivitamin, fish oil and B complex. Greens are highly needed either cooked or in smoothies..cooked soups with marrow filled meat bones are highly advantageous to your conditions..your body is screaming for nutrients. A last resort for your extreme pain that you are in is always the ER. They will not turn you away. Again i am so sorry for your pain and poorly managed conditions.
Omg that's the saddest thing I've ever read. I can't believe ur having to cope with all this without having the proper care ur due. I've had ra for six years and though I sometimes feel the rheumatologist understands ra on a physical level she someone's doesn't get the emotional implications it brings. I'm now taking sulfazalazine and waiting on drug counselling to start leflunomide. Also I can get steroid injections four times a year. This week the rheumy is organising an oral course of steroids in addition. U need to get help. Ur coping with too much. Physically u sound like ur struggling and I can only assume that emotionally ur at ur wits end. Please keep on at the health professionals, use ur pain and get angry and demand help.
Keep us posted.
Hi gemmma thank you for pushing me forward im usally very postive but wrist fingers stiff very painful and knuckles sore and swollen ive livedwith RA since i Was 7 i have well got a clinic appt well sed then
I cant get any more help makes it worst i work at tbe hosp orthopaedic fractuered spine screw plates 1991it very hard keeP going i was diagnoise whEn i aas 7 been in pain all my ,live got appt thursday this week or next week there nothing gp will do not steriods ive had toes tdndons straighten op went wrong housebound had rods in wrists thumbs fused had both feet donei had accupjbture pain managemdnt cNt do anything for me cant have op again on feet only make it worst imstuck in a catch 22 cos got IBS tablets got lactose in them that makes me ill sick and diahorea just fed of pain thank you for advice
Hi gemmai got appt next thursday week consultant opened anothrr clinc for the high demand of patients ive RA since i was 7year old bbut grow out of it i though came back worst than when i turned forty difficuites is i have 90 per cent Of both ythat means 90 per cent of RA and 90 percent of fibro and ME ive got double the pain in joints course same damzge wont change much cos it took ages for my stomach to accept RA tsblets cos lactosE interances / allergy bad reaction
Oh you poor baby!!!! My prayers are for you!!!!
That's great you've got an app in. Let us know how u get on.
thanks for your concern kim..i have asked before to change my tablet RA consultant is reluctant to do so cos mine is complicared case
i will let you know gemma and thanks for your concern i have a feeling be another cortison injection
Hello thanks for getting back to me I take naproxen every day with my methreixne and frolic acid but I feel the naproxen is not doing much good but I got docs on Monday so I will know more then what is that u take for our RA if you don't mind me asking.
well had the emergency doctor IBS got so bad as i take oramorpha as state and couldnt satand the pain any longer the locum doctor said he going to complain to my gp i should have been sent to clininc ASAP he gave me a injection for the pain and was going to contact my rheuamatologist he give strong co codamol 500gram /100grams very strong one hands stilll bad but took the edge of my pain
kim all to do with shortage of money and clinics shut or downsize thats why i have to wait for treatment and GPs here wont interfer with rheaumatology when them put you on tablets plus aswell when you get passed 65 here they dont seem to care with people wtith RA but if they treated them the health bill here wouldnt be so big im 60 at the end of my but ive had RA since i was 7 so ive had it all my life i have accupunture but heard of medicnes indian one tried chinese medine but can get indian or afrcian medicines that would help and i wouldnt by online to damagerous i would try them if the indian afrcian medication was regulated but they arent here that doesnt help here doctor gang up together stand by each other ive tried in the past through hosptila unions im retired hosptial worker due a fractired spine ive asked them but nothing they can do they are looking into neglect of my toes and tendon operations
Very poorly managed disease by your physician, which causes your disease to progress and worsen due to unmanaged inflammation that are caused by many different factors causing irreversable damage to you. Can you look for a different doctor? DO doctors are often more helpful in terms of looking at the many ways of healing you personally..
cheria i have got a doctor took over had the same one that left the surgery thought this one was better when i had baker cyst in my knees they cam out to see me but said no point nothing the could give i had to get in touch with RA clinic they not interferr with hsoptial ive tried everything chinese medcine and accupunture
welll update my last post been to hospital knuckles are bad state and got to have ultra sound xrays showed some degeneration and damage might end up with a another operation for my feet doing ultra sound to try and disperse scar tissue i had this on my fractured spine it worked no change of tablets cos this was emergency clinic could on talk about hands and my feet got wait til july consultant away holiday all may so re medications nothing as altered got to wait