Hey everyone I'm so glad I found this site ...I'm 37 urs old and just been diagnosed with fybromyalgia but being tested for Lupus I'm in bed I can't move I can't sleep I start itching at night it starts to hurt when I breathe I have very sore joints almost crying in pain severe headsaches and blood test r showing bad ANA results I already have vitamin D deficiency and ostiomalacia I have started having sores up my nose and loads of cold sores I'm tI red all time depressed and I can't eat I just have no appetite .... could someone tell me if they think it's possible that I could have the 2 diseases at one the pains I have in my body is dull aches then stabbing burning pain it's getting worse not better I had blood tests taken and I also have electolites it's feels like 2 wires beING connected then they spark and give me really bad electric shocks someone please help me they have given me paracetamol 500mg and tramadol and deloxitine x
I had these pains. Was plagued by electric shock pain. Don't have Lupus but another form of vasculitis. Horrible mate. I really sympathise. X
Are you in the uk??
Oh ur joking how did they get to the bottom of it thank u so much for replying I'm in so. Much I'm thinking of asking the doctor for crutches to help me walk I don't know if she will give them to me what do u think ? Xx
Oh a long time getting diiagnosed. Saw so many docs and no one had a clue. Finally saw a rheumatologist and she clicked I had an underlying inflammatory disorder. Finally diagnosed by an immunologist 12 years ago x
Yes I am lovely why do you ask x
Vasculitos uk have a free helpline great info and support. Look them up and call them they are so good. X
Thank u I will do x
Hi t96542
I had the same psin as you and had an Erythrocite Sedimentary Rate (ESR) blood test that showed a result for inflammation and borderline Lupus. My doc referred me to a Rheumatologist and he diagnosed Polymyalgia Rheumatica for which I was prescribed Prednisolone(steroids).....which helped greatly with the pain.....did you have an ESR blood test??....
Symptoms are so similar for a lot of these auto immune illnesses aren't they. Crucial to get a good doc isn't it...feel blessed to have a great specialist at the moment.
Hi margaret22116
Yes it is! I had to wait a good while b4 i saw a Rheumatologist so much so that I paid to see a private Rheumatologist. The steroids worked well but as with all meds they do have adverse side effects. I am now tapering off the steroids by 1mg a month so I have gone from 15mg to 7mg. You do get withdrawal symptoms but they don't last long and so far i do not have any recurrence of pain😊.....i obtained a good book written by a doctor who had an autoimmune disease and she gives great advice on how to reverse A.I.Disease. I will send you a private message with the title of the book because i think it will be allowed to be shown on here......have a good day and my best wishes to you......
Great Lillian. Very interested in that as I have recently had to stop my medication because of another issue. Want to look now at ways of treating myself naturally if I can. I will be very interested in that thank you.
Lillian how are you today thank you so much for replying to my post I was so scared to post incase I didn't get a reply lol ....x
Hi t95642
I am feeling quite well today. As previously mentioned I am tapering off steroids (prednisolone) initially when tapering from 15mg i had withdrawal symptoms but not everyone gets them. Now im down to 7mg which i dropped down to last week, I have not had withdrawal symptoms. I have been following the book i mentioned to Margaret and it has made a difference to how I feel. I have had no pain since tapering, but will not know if the pain has completely gone until i am off the steroids..I also found out my B12's are very low and if B12 is low it can make you feel very fatigued, weak and affect your mental clarity...i am starting to feel more with it and less tired since i have been on B12 patches...... just to mention there is an Autoimmune forum online also.....i shall send you the book title by private message......my very best wishes to you.....😊
Awww thank u very much lovely I will definitely give that book a try because I need all the help I can get at the moment well done for getting off the steroids must b a awful process I hope u get better soon always here if u need a chat xx
Hiy95642
Thank you very much.....il bear that in mind...enjoy the rest of the day if you can!!..😉
Can u remind me what esr bloods are ? Xx
Hi t95642
An ESR blood test is an Erythrocite Sedimentsation Rate blood test which tests for inflammation in the body. A high rate indicates inflammation...hope this answers your question....best wishes....