Fibromyalgia 27 years but maybe Lupus now?

[Megapodius]

Hello all. My name is Mega. Short for Megapodius. Mega Fauna, big feet. Ha. Name just appealed to me somehow. Down to business then. Fibromyalgia symptoms seemed to change mid 2016 after not much change for decades. There's lots more backstory but let's save that for later. So I am now full of fluid. Some in right lung. Massive oedema in both hands. Burning and lightening strikes in in hands and feet. Symptoms worst at night. Wake up in drenching sweat about 3am most nights. Four hours average sleep per night. Etc. Most of you will have an idea of how the story goes. So the other night, no morning having been up all night with burning hands particularly at finger tips ends I washed my hands with hydrocortisone acetate cream. This stopped the burning almost dead in its tracks. Both my GP and Rheumatologist both said that was not possible. What do you think? And if it is possible what is the mechanism behind it working. ☺

[Paul_Howard Partner LUPUS UK]

Hi Megapodius ,

I'm afraid we are not medically trained here so I cannot comment on the hydrocortisone cream seemingly stopping your burning finger tips.

Have you discussed your newly developing symptoms with your rheumatologist and suggested that you feel they go beyond a diagnosis of fibromyalgia? Have they carried out any blood tests for lupus or other possible causes?

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

[Megapodius in reply to Paul_Howard]

Hi Paul and thank you for your message. Paul I hardly know where to start having been diagnosed by our local, now Emeritus Professor of Rheumatology a long time ago. I was 33 when I commenced my search. Thirty eight when the budding Professor diagnosed me with Fibromyalgia and I am 65 now. So it has been a while. Diagnoses was via the old 11 of 18 tender points; symptoms and personal history.

I think some GPs can get a bit stuck when a Specialist gives a diagnoses and they are loath to buck the Medical Hierarchical system if they don't agree.

I have had the same GP for 25 years. He's a nice guy and capable. I think perhaps because our 2 girls are now reasonably senior health care providers; GP and Nurse Practitioner equivalents I have stuck my neck out a bit more as I am given to argue the toss with them about a diagnosis. Evidence based medicine must prevail is our motto.

Anyway Paul to your questions. My burning finger tips are caused most likely by Dermatitis and not Peripheral Neuropathy as some would have it. There is a whole back story to this but unless someone wants to discuss Irritant Contact Dermatitis to Soft Plastics we might leave it at that.

Having now paid personally for a whole swag of blood tests my wife (bless her heart) and I are reasonably confidant that my personal health problems can in the main be leveled at a major hormonal imbalance which has gone undiagnosed for decades. This is mainly because there are limits to the tests our good Drs can order on the Public purse. I may well have Fibromyalgia and Lupus for all I know.

We will need to work with the firm, hard diagnostics at hand, solve the problems and see what is left over. Of interest perhaps is my being diagnosed with Parkinsonism some six years ago. A nice Geriatrician has been slowly but surely removing the Parkinson's drugs from my system and my thinking ability has been restored somewhat. A stroke of luck turning 65 and getting assigned a very capable Geriatrician with a firm background in Parkinson's.

The discussion with my former Neurologist is yet to come. It seems a Specialist can gainsay another Specialist but a GP is not empowered to such a degree.

Again Paul thank you for your concern.