Lupus Support Group

Hi everyone my name is Joesy and like others, not sure what group I fit into. I was in fibro group to see if PMR (Polymyalgia Rheumatica) were there. Im 54 and lived as a healthy, athletic person, employment always involving my physical abilities.

Woke up 1 1/2 ago flu like pains, mostly shoulders and hips. I had to find my first PCP and start an unfamiliar journey. Currently working with 2nd opinion Rheumy which was the suggestion of my 1st Rheumy. Bloodwork ,slightly elevated ANA and ESR?? Need to get better organized tracking blood results.

Also working with Homeopathic GYN as she feels Im in Adrenal failure but my body pain is not responding to her therapy.

Tried many different meds and currently back on prednisone tapering. Im on 10 mils and pain is still too high. Ex, daily chores hard to manage, sleep positions painful, FATIGUE relentless. Im more uncomfortable now than I was at the onset of illness. PMR would be the prize seeing as it goes away 1-4 yrs. 1st Rheumy not convinced with any diagnosis.

All my pain is caused by "light" weight bearing activity and range of motion. No external trigger points (Fibro) and now everywhere not just hips and shoulders (PMR) I have tingling, like my forearms/hands have nylon stockings on. What should I ask my new Rheumy? Any test/retest? Thank you for any reply http://res.mdjunction.com/components/com_joomlaboard/ emoticons/sad.png

I meet 2nd opinion Rheumy this week

oops not failure, I meant Adrenal FATIGUE

hey josey, i too have some of the symptoms that you mention - pain in shoulders, hips, tingling in arms, hands and feet - i am told that i have sle and fibro. there are alot of knowledgeable people on this site and hopefully they can give you some answers. wendy

Thanks Wendy

Hi Josey and welcome to the board. The people here are amazing and very caring. I have been dealing with lupus for 30 years. Lupus is different for each person. It is common to have more then one autoimmune disease. You need a good rheumy that really listens to you. Lupus can only be diagnosed by looking at your whole health history, lab tests are only something to consider.

I wish you luck in figuring out what is wrong. Whether is it lupus or not, let us know the outcome.

Alison

HI Josey and welcome. Perhaps you could ask your rheumatologist for a referral to a neurologist as well about the tingling and pins & needles.

Marie

Hi Josey...welcome to this great support site.....I sure would tell your new rheumy about all the symptoms you have and they can take it from there. Alison is right lupus can be different for everyone. Keep a record of what is happening each day that way you can let them know exactly how you felt on a particular day. Any time you feel like chatting, venting or sharing your appointment, someone is usually on here and you can also PM us anytime.

Eva

Thanks everyone, The weird thing too is everyday is pretty much the same. The only thing that varies is the arms tingling and that symptom is very mild, not like when your arm falls asleep. I thought it might be too insignificant to see an neurologist. My son has acute flares with his crohns same with sis ,MS. I cant say I have had acute flares.

Welcome Josey. I have tingling and pain in my feet. I had an EMG and neuro found neuropathy. Treatment was an increase in my cymbalta. It worked almost overnight. It is hard to get a lupus diagnosis so hang in there.

heidiclouser thanks for the welcolme. I did try Cymbalta and unfortunately it didnt work for me. I know it works well for lots of people. I go next week to new Rheumy. Going with my cover letter and everything I've done so far. This is such a help