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Feels like weeks from hell..

Dec 16, 2016 1:50 PM

Last week I was visiting my mother in the northern Norway. At this time of year it is dark all day and snowing. For once did my mother understand me and my state of health(she has psoriasis arthritis), that helped a lot. While visiting my rashes was away(I use cortisone to hold the rashes down), but my pain increased. The rash and mouth ulcers has not been completely gone since april... After a few days at home and some trips outside(it was cold and a little sun) it is on its way back ๐Ÿ˜– But no more episodes of butterfly-looking rash that lasts just for some hours.

The pain on the other hand has gotten worse and worse. First my ankles and hips got worse. Then my knees, hands and back. Now my elbows started to get painful too. ๐Ÿ˜ฃ My primary doctor does not want to give me more pain meds, but she decided to send a referral to a rheumatologist. We decided first to send it to a pain clinic AFTER my MR in 17. january, but since I am getting worse she is going to send the referral when my new bloodwork results comes back(I took them today).

Today I had to walk to my appointment with my therapist and I was shouting(not to loudly) and swearing all the way to the appointment.. It takes 15min to walk the distance.. Because my elbows, left knee, left hip and hands was terrible painful.. Cramps..

I do also have non-epilepic seizures that looks like comes from the heart or somewhere in that direction(things like low blod sugar and rapid changes in my blood pressure og pulse triggers seizures). I am really careful to avoid seizures, especially if I can fall and hurt myself. One of the symptoms that can indicate/warn for a seizure is shortness of breath.
Have anyone else experience with this?

Now I am just hoping do get through the christmas in a way. And hoping that my body can decide if it is going to be cold(+raynauds) or warm(fever)... ๐Ÿ˜จ

Does anyone experience anything of the same?
I don't have any diagnosis yet..

Sorry for the long and kind of complaining post. I am just having some weeks from hell... :/

I hope you guys have a better week then me <3 <3
This community and you are amazing <3 I am thankful for the support that I get from here

Dec 16, 2016 2:30 PM

Sorry to hear what you are going through, sending prayers your way that u find answers and feel betterโค๏ธ

Dec 16, 2016 8:15 PM

IceAki, I'm sorry to hear things are going so badly. I have sjogrens, fibromyalgia, hypothyroidism, and suggested I may have Raynaud's. I get muscle and joint pain, along with oral thrush, dry eyes and skin, and although ulcers (sjogrens). I don't get the butterfly rash though (lupus symptom). I wear crafters gloves to keep my hands warm in cold weather. I've become very intolerant to cold weather. I also keep my neck and ears warm (Earbags are my ear muffs). I hope you can get some relief this weekend and next week is better for you! Hugs love and prayers it is! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Dec 17, 2016 4:09 AM

Thank you for the support โค

The theories of my diagnosis is psoriasis arthritis, sjogrens, lupus, raynauds syndrome or RA. Fibromyalgi was a theory, but it does not fit. I usually don't have much muscle pain(my muscle pain comes from fatigue), my pain is mostly i joints and the tissue around.

I have to use wool socks in the autumn, winter and spring. Glowes too for my hands.

But beneath my cloths I use support for my back, knee, elbow and ankle. If I dont my joints get really painful and swollen(my fiancรฉ gave me a new nickname mumie) ๐Ÿ˜‚
I dont fint any for my hands that fits and support the right places.. With no diagnosis it ia hard to get help with this

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