Sorry about the prolonged absence. Needed some recharge time due to serious burnout from various tests and docs and general medical info overload.

Will try to keep this short as I'm experiencing quite a bit of pain, fatigue and brain fog (although I've never been one for brevity ). Please disregard if I'm not making sense.

Went on Imuran in January for Sjogren's and other autoimmune issues. After about a month, I noticed a decrease in the intensity and frequency of neuropathy symptoms along with a few other signs that the med might be helping.

Unfortunately, I simultaneously experienced a HUGE increase in fibromyalgia symptoms. I don't believe that the fibromyalgia itself got worse, just that my brain could only comprehend so much illness at a time and only after the Sjogren's had receded somewhat did I realize how bad the fibromyalgia has been all this time.

I figured the fibromyalgia was just in a flare mode, so I expected to start feeling better after awhile. But it did not let up, and last week, I started getting consistent numbness and pain in my feet whenever I stood for more than a few minutes along with some other indications the Imuran might be losing effectiveness (like the return of rashes, mouth lesions and swelling of lymph nodes).

Today, I overdid it by actually shopping for clothes, something I only do twice a year or so (I had gift cards just begging to be spent ). I was on my feet for at least an hour.

After I'd had some lunch, I was in the kitchen squatting down for just a few seconds to get something out of a low cabinet. My feet went totally numb, which is nothing new, but then my ankles seemed to lose the ability to hold me up, which has never happened before.

Down I went! Fortunately, my husband saw it happen, helped drag me back up, and held onto me until the feeling came back in my feet and I felt steady enough to stand by myself.

Wondering if there's a possibility the sudden ankle weakness could be related to neuropathy? Am not thinking clearly enough at present to research but was curious nevertheless.

fanfaire

Boy that hurts and can really scare you,I glad your husband saw and
was able to help. It's hard when your by yourself,but when the feet
go numb it's awfull either way..Hope you don't have to much pain.
hugs to all. Sue

Fanfaire,
Let your neuro know about this post haste, immediately. It may be the neuropathy, but it could be something in your spine causing it. Just don't let a symptom of this severity linger without contacting your doctor.

Billye

--and given the meds you're on, ciruclation issues in that area should be looked at as well (you wouldn't be the first person to have begun or exacerbated symptoms of peripheral artery difficulties after beginning a new round of medications).

I am so sorry. I agree tell your docs. That is my fear falling cause sometimes I feel like my legs would give out. At the start of this my ankles were really weak from lack of being on them. I have built up more strength and range of motion from being on them. I still fear falling. My neuro said it just feels that way but won't happen. I am not so sure. Well feel better and I hope at least you got some good stuff shopping

Thanks for the replies. I don't have a local neuro, and the rheumatologist I was referred to is on maternity leave until July. So maybe I'll check in with the primary care doc.

Have not had any more problems with my ankles since yesterday afternoon. But it still hurts very much to touch my feet to any solid surface like the floor or furniture or mattress, and whatever part of my foot is touching an object will burn or tingle or go a bit numb. Makes me wish I could levitate.

Was shopping for an outfit for next Easter since I now live in a much colder climate and all my warmer clothes are dark colors and about four sizes too big. It was under 30 degrees last Sunday, and the outfit I ended up wearing was solid navy and black, and the skirt kept sliding off my waist every time I stood up in church! Luckily, the store I had gift cards for was having a 50 percent off sale.

Found a skirt and top set that were black but had a pattern of small pink and white flowers. Also got a stretchy royal blue sweater that my hubby will enjoy seeing me wear. And I got a robin's egg blue tank and cardigan set.

Fortunately, I should be all set for clothes now until the swimsuit I wear to aquacise three times a week wears out probably next winter. I generally only buy stuff to replace something that has holes in it or that is too big to stay on (I once was 65 pounds heavier). And since I'm no longer able to work, I can generally get away with sweats and giant sweatshirts most of the time.

fanfaire