Welcome to the forum Walt
I am sorry about your diagnosis and your pain. I often wonder how many people have been misdiagnosed with CFS when they really have lupus or other undiagnosed symptoms. The trouble is that a diagnosis tends to stick and no further investigation is done.
I suppose you have had a consultation with a rheumatologist who gave a preliminary diagnosis & took blood for thorough tests, and you are now waiting for the follow up appointment to confirm the diagnosis and start on medicine for the lupus? Most follow ups are within two months and the follow up appointment is usually made either at the time of the foirst or you should hear very soon after. So if you were expecting to hear about a follow up and haven't have heard anything yet about a follow up you need to take action now.
Most of the medicines for lupus take several weeks to kick in, or even a few months. Surely you have been prescribed one of the many NSAID's, (non steroidal anti inflammatories) for joint pains? If so and it isn't helping your GP can prescribe other soprts of painkillers. What works for one person doesn't always suit another.
Another fast pain reliever is the drug Prednisone which quickly reduces inflammation. It isn't a good idea to take it long term because of side effects but it can tide over or be used to quickly calm a flare up. It might not be used before blood tests because it can alter the results. This is assuming your pains are joint pains caused by lupus, but several different sorts of pain can be found along with lupus ones, such as from fibromyalgia which is fairly common along with lupus and needs different treatment.
Your GP should be able and willing to help you with all this - prescribing NSAIDs and Prednisone, although they prefer to have the consultant's go ahead for the Pred, and he should also be willing to contact the consultant to ask what on earth is going on. Unfortunately there are often secretarial slip ups and with the current performance of the Post Office, post goes astray. Your GP might have already heard from the consultant though.
By the way, get copies of your test results when they are available
We can't assume that all pains or new symptoms are due directly to lupus and the GP is the first port of call. There's also A&E. Please let us know how you get on - nobody should be left with untreated pain these days even though it might not be possible to completely eliminate it, it certainly can be considerably reduced and it is physically bad for the body to suffer pain, not to mention its effect on quality of life.
Bye for now and very good luck to you. Do you have somebody at home to help you out ?
Hugs
Clare
