Sjogrens and aching all over?

Hi Jennifer

Growing up I had terrible leg aches in my lower legs. Not cramps or charley horses but excruciating pain not known to anyone else in my huge family. They continued from earlier than kindergarden into my teens. Am in my 60s now and have that maybe once every 5 - 10 years.

20 years ago I began having very brief excruciating pains in my toes, 5 or 10 seconds. I'd have a number of them and then they'd disappear for a long time. They completely stumped my neurologists.

Over time they've expanded both in area and duration. Though i'm in remission from them now, they sometimes happen in my hands, feet & ankles, sometimes lasting 30-46 seconds. I cry out and can't breathe through these pains, and I am well acquainted with physical pain & breathing through it.

I have small-nerve peripheral neuropathy too (also in remission right now) and the pains are quite different but could be related I suppose. Criminy! I hope the excruciating pain is not an indicator of where the neuropathy will progress.

How long do your pains last?

Hi Jennifer

I have also suffered for about 7 years! Was prescribed Hydroxy but again like you decided not to take them! I'm on a high dose of . . Cellcept is the brand! I have pains though not as severe but what has helped me enormously is removing gluten from my diet! I have had so much more energy and feel less pain! Gluten can be a poison to some! Also, I now take Vit D - that has helped a lot but get checked first!

Wish you well!

Hi - I have this pain too. It comes in blocks - sometimes quite faint but other times it flares up. It's much worse when I'm still/ resting and I describe it as like toothache in my limbs but growing pains works too!

I was misdiagnosed with RA and treated aggressively so I've tried lots of strong drugs and also hydroxichloraquine. All have given me terrible side effects/ allergies until the one I'm on now - Mycophenolate - which I'm tolerating really well. Still got the awful pain though. For me I think it's a non erosive version of RA with tendinitis and small fibre neuropathy.

Mine had previously settled down to nasty numbness and tingle everywhere but has recently flared up again to nights of terrible gnawing toothache pain. I just think it's Sjogrens I'm afraid. Hoping Mycophenolate (Cellcept as they call it in US) works eventually - I've only been taking it for 9 weeks so still time fingers crossed!

Hi Jennifer,  I know exactly where your coming from,, mine is actually down my left side, aches in my leg and stabbing pains in my arm! I can't take any of the prescribed meds  cos of allergic reactions but I've been taking Magnizium for the fatigue and Biotin for skin dryness / rashes and for me anyway it's worked, I can actually get through a day without having to go to bed for a rest and climb the stairs without feeling I've just climbed Everest 🙄 I can, most days when it's bad, keep the pain under control with a combination of paracetamol and ibuprofen alternating  every two hours., I've just recently taken up yoga, and though I was very sceptical, I really do think it's helped😊 That's me and we are all different but all we can do is try and stay positive.😊Good luck👍🏻

Thanks so much for all your replies! So useful to have access to this forum and receive your helpful comments and your similar experiences. Sometimes it can feel a lot like a lonely condition made harder by the fact most of us look well and others cannot understand how we feel!

​My aches are through my shoulders down my arms to my wrists and through my hips down my legs to my ankles. It seems to start of an evening and lasts sometimes through until the next day and gradually wears off. It makes my arms and legs feel heavy and sore. I suppose it will just be a case of resting when I feel this way but do find it frustrating when I want to do so many things!

​Thanks again for your helpful responses :-)