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Myositis Support Group

Whirlwind of Emotions

#1

I can pretty much count on one hand so far the "bad" days I have had so far this month Feb.

The worry, the stress of no job nor prospects, new medical bills coming in from muscle biopsy, unemployment benefits & the hoops they expect you to jump through..whoa

Having some emotional upheavals here to say the least. New symptoms of pain in my thumb joints wrists and ankles, night sweats, no real sleep pattern...still having muscle pain especially in my legs and hips.

And just overall being tired. And crying spells...crying - this is so NOT me!

Did my 1st blood work up since getting on Imuran, follow up with Rheumo on the 16th. Side effects have been tolerable I guess, but feel no relief without pain meds.

Did some yard work over the weekend, just tidying up my potted plants, pulling a few weeds in a rock garden...that kept me in bed for 24 hrs. afterwards.

Speaking of muscle biopsy-the incision has "still" not healed after 45 days. At one end it has a deep

scab that show a few stitches still attached to it, do not want to remove the scab & leave a deeper scar?

Will have Rheumo take a look, but could it be the immune suppressant Imuran hindering the healing?

Connective tissue disorder, Inflammitory Myositis with underlying Raynauds syndrome

Just checking in, haven't heard from any posts in a while, hope everyone is doing well?

Thanks for the ear.

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#2

Hi Shine,

I'm so sorry that you're feeling down, and I definitely understand the stress that you're experiencing, as the financial aspect of dealing with a major illness is something that many don't even think of, until you're living it!

For my first couple of years on the immune-suppressants, I went through a lot of changes to my body that have fortunately sort of evened out 5 years later. I used to have horrible night sweats, initially I lost a lot of weight very suddenly, and I was very emotional - likely from just being overwhelmed by everything that was happening to my body, and dealing with the stress of all the appointments and getting things straightened out financially. It's a lot to deal with.

It will calm down though. Your body will adjust to the medications. You will start to deal with the stress better, as you continue to gain more information. You will get stronger emotionally as well. To me, the unknown is always the scariest. As you get more information, you will be more empowered and feel much more confident. Promise!

Immune suppressants do hinder your ability to heal, especially if you're in a flare. If you are concerned about anything, the pain, your incision, medications, etc. I would talk with your rheumatologist. It's good to establish a open line of communication with them so that they can track your symptoms and help you manage anything that comes up.

Hope this info helps :-)
Maren

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#3

Hello! I can relate with the pain in my muscles and hips - in addition to my fingers aching from the cold weather recently and my skin has been extra dry lately as a result. In addition, I feel you with the muscle biopsy - I had one about 70 days ago and its just now starting to heal although it is leaving a very noticeable scar on my arm unfortunately. If you ever need to vent or someone to relate to, please reach out :)

Dermatomyocitis, possible lupus diagnosis

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#4

thank you for your input..have a blessed day.

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