Arm pains

[loretta1106]

Most of us have joint pains but does anyone have constant arm pain. Mine stated about a year ago

[HollyHeski Administrator]

Hi, what sort of pain? Have you mentioned to your docter or had any tests?

I have problems with my hands and arms.

[loretta1106 in reply to HollyHeski]

I am not having much luck with two rheumatologists. If I complain of pain, they really don't tell me much.

[HollyHeski Administrator in reply to loretta1106]

Is it pain in muscles or bone, both arms? Do you get pins & needles. All the time or just at night, any other symptoms in rest of body etc?

I'm asking as there are so many things that can relate, I'm trying to narrow down the answers you will get here.

Have you got any other auto immune problems as well as APS?

[loretta1106 in reply to HollyHeski]

MCTD arthritis but the arm pain is unusual. It feels like muscle pains

[HollyHeski Administrator in reply to loretta1106]

Only you can tell if this is different to your usual MCTD arthritis, as you will read from the article below there can be so many different reasons for the pain.

My pains are from arterial blockages in my subclavian arteries as well as neurological and arterial thoracic outlet syndrome!! Complex and took many years to get a diagnoses. My pain relates to restricted blood flow and is not muscular.

Common reasons for APS patients is B12 deficiency, thyroid, other autoimmune disease, but if this pain is causing you a change in your quality of life it should be investigated?

my.clevelandclinic.org/heal...

[loretta1106 in reply to HollyHeski]

Thank you

[murphylotte]

I have pain in my joints. Like the elastik is to thight.

I also have pain in my skin, but get medication for this.

Maybe your inr is to low?

[Lure2]

Hi Loretta!

Can it have to do with a too low INR? Are you now selftesting? Remember when you had great swings in your INR and also only did fingerpricktests.

Take good care of yourself!

[loretta1106 in reply to Lure2]

Hello. My INR still fluctuates. I do self test and the tests are more accurate now but I do have a blood draw once in a while. INR can be good for long periods then go too low or too high. I’ll notice if too low an INR makes a difference. Good to hear from you. Take care!

[Lure2 in reply to loretta1106]

Thanks Loretta!

[Tucson]

I have joint pains as my Aps is causing my joints to disintegrate, My knees are waiting replacement and I've just been diagnosed with severe arthritis in my right elbow and shoulder after years of being told it was everything else under the sun. The pain in my arm feels very muscular and hurts all the time. Mine was diagnosed because I asked my GP for an Mri because I was sick of being given exercise sheets that made the arm hurt more. I don't see a Rheumy I see Prof Hunt at st Thomas' who has happily made referrals for me for my joints.

[Lure2 in reply to Tucson]

Hi Tucson,

I remember you did get strokes at an INR of 3.8-4.0 What anticoauglation did prof Hunt put you on now? This is exstraordinary to ge a stroke from APS with Warfarin that high as 4.0. Are you primary APS or do you have other autoimmun illnesses like RA?

[Tucson in reply to Lure2]

Aps is my only autoimmune condition as far as I know. Not only did I have strokes at 3.8 and 4.0 I also has a massive internal bleed. Since going onto Clexane I've had no issues at all with strokes or bleeds but they intend to change the clexane for another injectable at my next appointment. Bizarre isn't it because I never had any issues with warfarin, always in range and always the same dose and no side effects but clearly not suitable because of the ongoing strokes and bleeds. I've been off it for two years now and everything has been fine.

[GinaD]

Someone correct me if I'm wrong. My understanding is that one consequence of long term warfarin can be arthritis. When warfarin interferes with Vitamin K it also, therefore, limits bone's absorption of calcium, which then builds up in places such as in joints. I have had a hip and a knee replacement, and though both joints were undoubtedly effected by an untreated knee cap break, I am pretty sure that my high serum calcium levels were also a cause. .

[Tucson]

I'm not on Warfarin, although I was for two years.

[smimayjill]

Just a thought but my Mum had the autoimmune disease polymyalgia rheumatica and it was very painful when she tried to lift her arms .....

[altar]

Yes, started a few days ago. Radiates down my arms from the shoulder

[loretta1106 in reply to altar]

Odd and just part of what we go through. One thing that has helped with this and most joint pains is chair yoga or gentle excercises and stretching.

[MaryF Administrator]

Hi, I get pain

s in my limbs and mine was far worse before I got both my Vit D and also B12 too decent levels and also ordered my own Thyroid tests, I still get it but it is not a the previous levels, but as HollyHeski states it can also be for many reasons, including complications of our actual disease. I hope your GP can help you. MaryF

[loretta1106 in reply to MaryF]

Thank you Mary!

[itasara]

I had arm pain that started one year ago. It could be referred pain from somewhere else, but I really cannot tell. It might come from my shoulder/arm joint even though I feel in in my upper arm or near my scapula. I just cannot pin point it. I bought one of these harnesses to help me sit up and stand straighter. I didn't think it would help, but actually it might have. I also have this spray, smells like menthol and I spray it on my arm and shoulders and neck (where I do have arthritis) and although I don't know for sure if it works or not, it kind of seems to. I do an arm exercise now and then where I swing each straight arm separatey across my chest. So after a year, is the pain better? Kind of yes. I went thru some painful time over last winter when I'd get dressed or reach for the light switch at the back of my bed. It does seem better now but not gone. I see my internist soon and I'll mention it to him.

[loretta1106 in reply to itasara]

Thanks. I really think it’s a puzzle for sure. When it started , the pain was at times unbearable but has varied and sometimes doesn’t hurt at all. Maybe it’s related to osteopenia I have. So many things about this disease is puzzling.

[itasara in reply to loretta1106]

Yes many aches and pains we humans have can be puzzling. I take the wild guess for myself that aging and maybe lack of exercise (and I am weaker) could be part of the problem. And since this pandemic started, I have been much less active than usual, although this arm pain started in October, 2019 and supposedly the virus was not around then, but that is not proven for sure. Could be an MS issue, but I highly doubt it.

[HollyHeski Administrator in reply to itasara]

Hello Atasara, I have been re reading your replies and wondering did you get tested for Hughes/APS?

MS can flare in many ways, symptoms can overlap with MS and APS and although rare it is possible to have both.

Yes your right lack of gentle exercise and aging can deteriorate our health. Really wishing yours improves x

[itasara in reply to HollyHeski]

no I haven't been told by my neurologist or internist when I mentioned it. I'll see whith my Nov. yearly regular appt. what my doc says. MY MS has not progressed since the first major symptom. Whatever symptoms have, mostly urinary, are also commiserate with getting older and multiple pregnancies I had . So I am off medication for over a year; so far so good.I looked up APS. Sounds like some of the symptoms are very similar to MS. I don't think that is what I have, however.