Pain when my skin is touched

[jennawings]

Hello,

I haven't posted in a long time - my official diagnosis is undifferentiated connective tissue disease with signed of lupus and Sjögren's syndrome. My last rheumatology check up was almost a year ago and despite supposedly 6 month reviews my appointments keep getting changed.

The reason for posting today is because over that last 2/3 months my symptoms have been flaring a lot and I've been feeling extremely fatigued, really bad brain fog, bad butterfly rash, my knee joints and legs have been swelling l and a digestive system in turmoil to name but a few symptoms. I think my flare was triggered by an attempt to reduce by steroids, emotional stress of a family bereavement, stress of buying my first house and an extremely busy time at work (I'm a secondary school teacher).

I'm currently on holiday and attempting to relax and get myself well in time for the new term in September but I've noticed that over the past couple of days by body has been painful to touch in a lot of place; my back and abdomen would be the most sore. I did have a deep tissue massage yesterday which I thought would explain my back being painful to touch but not my abdomen as they didn't touch that.

Has anyone experienced this before? I don't know if I'm just being paranoid and assuming it's related to my illness because it has been flaring or whether it is a new symptom to add to my list. For the past 2 years or so my condition has relatively stable.

Thank you in advance for taking the time to read this and to reply.

[tduvall68]

Hi sweetie,

I feel the same way as you do. I have lupus now for about 5 years now, and it seems to get bad, on days that the weather goes back and fourth from cold and to hot and I live in Fort Collins, Colorado, in the states, and it is so crazy sometimes it drives me crazy. I even get more swollen and more tired and I work in the medical field, which make it so worse. You will have good days and then bam , you get a bad day.

I always keep a journal and I also get pictures, cause that seems to really help with doctors, and I have 5 of them, all different areas due to my lupus, or lupus related.

It is still a big mystery about lupus and trust me, I am always looking and seeking other stories and talking to others with this suck of a disease.

Keep your head up and having a great support team is also awesome to have. I have a daughter who is 22 years old and has lupus and just recently got diagnose with APS ( Antiphospholipid Syndrome), and we try to keep a smile on our face and laugh a lot. (good medicine). But most of all, listen to your body. You are the only one who knows your body, and rest and tell people who do not understand on how you feel to go fly a kite( using nice words).

I hope you start to feel better sweetie, and god bless.

Hugs from Fort Collins, Colorado

Terri

[Bee1london]

I get this as a side effect of steroids. If you've been varying the dose this might be connected??? Hope you enjoy your holiday in readiness for the new term. Xx

[lilly60]

I am so sorry you feel like this my heart goes out to you

I also am on 6 months check up with my Rheumatoid specialist but it's also called open access so if I go to the doctor and she feels I need to see him I usually get in within 2 weeks

Perhaps just telling your doctor might help you in some way

Hope you find relief

I had to have my meds doubled up

Hops you have a better day x

[whisperit]

Hello Jennawings,

I do get variations in skin sensitivity - for example, I recently went through several months when my skin itched like crazy after a bath or shower, but it has recently stopped. I'll be buggered if I can work out why, so I'm no help. But I would definitely urge you to go to your GP, not least to put a rocket up the rheumatology department. A year without review is too bad (personally, I find that it is a waste of time calling the main number for Out Patient Appointments, as my letters tell me. If instead, I ring the specialist rheumatology nurse and 'happen to mention' that my review is overdue, I get a letter in the mail within days, as if by magic. I don't know what your system is, but if it's anything like mine, speaking directly with a rheumatology professional seems to be the way of doing it) x

[tremarel]

Hi Jen yes I get it a lot every part of me hurts even clothes on my skin. This sounds like fibromyalgia that comes along with lupus. I find mine is triggered by weather changes. Changes in temperature, being in drafts or just days when I'm so tired & worn out from doing nothing. It's hard to know what exactly causes anything with lupus. Ur not alone in it , keep smiling Hayley x

[soootired]

Can't comment on the painful to touch skin thing, but wanted to comment on your description of struggling to control your disease at the moment.

Like you I only have UCTD on paper. I've been treated with Azathioprine since December because i was flaring a lot with constant pleurisy and losing tons of hair. My rheumatologist was very sceptical about it though because of my sero neg bloods. But it has helped a lot, my hair has stopped falling out and I've not suffered with pleurisy so much.

However, early July i started to flare and i just can't get it under control at all. Just like you, and I've also been experiencing gastric issues which I'm sure are connected.

I just don't know how to get it under control, when I flare I take short courses of steroids (which are wonderful) but I can't take them for longer that a couple of weeks - not long enough.

Not very helpful for you really, sorry! I Just related to your situation.