Awful pain - in muscles and joints

[DiamondDoris]

I have skin lupus, test results always come back clear for systermic lupus (my father had that). I have Hashimoto's and inherited Restless Legs. I've had pain for years, but it's getting worse. First of all it was just joints - now it's in muscles - always symmetrical but no swelling. My nurse thinks it's fibro and I'm seeing my GP soon. My Vitamin D is good, but my iron has always been a bit on the low side.

I was wondering if anyone has awful pain in the palms of their hands and the feeling of metal rods being pushed into buttocks, legs, feet etc?

Yes and I have Sjogrens, spondylosis, eds hyper mobility and fibromyalgia although how the rheumatologist can differentiate the latter with all the other things going on I don't know. Unfortunately when you get one autoimmune disease, all its asshole friends want to join the party. Bloods can be clear but people can be seronegative. If all the usual autoimmune tests have been run for RA, Sjogrens , ankylosing spondylitis (often affects the back) lupus SLE perhaps consider fibromyalgia, chronic pain syndrome, cfs/me, reactive arthritis. I'd ask for a rheumatologist appointment from the GP. Also some undifferentiated connective tissue diseases (UCTD) can present as pain etc but nothing specific shows up so it's like an overlap disease with bits of this and that.

I forgot, I was actually diagnosed with UCTD by a private dermatologist when my Lupus lesions first appeared - GPs kept saying it was fungal etc. During Covid, I was taken off Hydroxychloriqune (sp?) by a crappy rheumatolgist and told to take up pilates or yoga (this is when I had a frozen shoulder which lasted 3 years).

Yes, it's difficult when you have so much going on and so many symptoms cross over.

I'm sorry you have so many conditions. Do they impact your daily life? My DS has EDS, ADHD and Autism - I am his carer, but I feel like a "bad" carer sometimes.

Yes, it does, I'm disabled but have some ok days. Why were you taken off hydroxy chloroquine? Can you see another rheumatologist & go back on it if there's no eye damage (which is a very rare side effect) & you feel it was beneficial, I'm on it & it does help somewhat. My rheumatologist advised against Yoga but advocates gentle Pilates. There's a link between eds, autism and ADHD. Also endometriosis. My youngest dd has endo & suspected autism & her older sis has lupus & possibly psoriatic arthritis. I think there's a genetic component but other triggers/causes. Don't feel bad, you can only do your best. Sorry your son has those conditions.

Magnesium can sometimes help as most people are low in it. If you take it before bedtime it can also help with sleep

Hi SeaToSki I've taken Magnesium supplements and sprays but they didn't work for my restless legs (I actually have it in my arms, chest and jaw!). Mine runs in the family so I've probably got genes for it. I'm now on Gabapentin which has helped greatly but I still take a sedative to send me to sleep as soon as my head hits the pillow. Obviously this doesn't always work when I'm in pain - and I get a lot of pain from lunch time onwards.

CherryRipe1 I don't know why I was taken off Hydroxi and didn't know it until I got the rheumi's report. It was the time of Trump evangelisizing about how it could cure Covid. Maybe it was in short supply....

I think maybe ask your GP to write to rheumatology & see why it was stopped. I think you'd have to be re referred to a rheumatologist to get it prescribed again, hopefully not the one who stopped it. Yes you could be right, I knew someone bulk buying hydroxychloroquine & I think there was a worldwide shortage. Im on medical cannabis for pain. I have the oils only when having a rough day. You could look into LDN. Liverpool University I believe have researched a test for fibro. I think they induced it in mice via antibodies or proteins , something like that,so hopefully it will be able to be tested for in the future and maybe something to help with treating it.

I will and I'll see what I can get out of my GP's appointment in a few days' time. Luckily we have a good relationship and she always listens.

Good luck op☘️

@DiamondDoris - Google low iron and restless legs. It's recently been in the media that studies have found strong links between the two, and I saw you mention you had low iron in your OP. It probably isn't the only factor but it could definitely be making your symptoms worse.

I knew about the iron but normal iron supplements are too low to do anything. It's iron in the brain and dopamine interaction (or something like that). In the US RLS sufferers have iron transfusions but I don't know if that's just a gimmick. I do take iron supplements but they don't like to go higher (I can't remember the dose) - thy're not prescribed I just get them from the chemist.