Numb arms/hands

[Sickofbeingill]

Hi, I have a diagnosis of lupus and sjorgrens. I'm having a terrible issue with my arms and hands going numb and causing me intense pain. Would this be a related symtom or should I consider another cause.

Many thanks.

[PMRpro]

Both arms? All of your arms? Specific situations/positions? I think anyone would need more info to express an opinion. I'm assuming you have spoken to your GP?

[Sickofbeingill in reply to PMRpro]

Hi, both arms but the right is more problematic. It comes from my shoulder to the tips of my fingers. Il be speaking to GP and Rheumatologist tomorrow.

[PMRpro in reply to Sickofbeingill]

If it is both arms it does mean they should check where the nerves leave your spine as they may be trapped. It could be tight muscles but that is less likely.

[JEM23]

Hi, I get this too, I have the same diagnosis as you , and it seems to be common. I guess like you I wonder if I blame things on Lupus etc when there may be something else going on so always better to be safe than sorry. Keep a diary also because I don't know if you are the same but I tend to shut things out of my mind once the symptoms subside, but a diary definitely helps you to have better conversations you have with your medical support.

[Sickofbeingill in reply to JEM23]

This is interesting. The pain is unbearable and I can tolerate a lot. I will keep a diary, and I'm going to contact my Rheumatologist.

[DogHospiceMom]

Hi, one of the first major physical symptoms I had of Sjogrens is acute hand pain. The disease literally dissolved a ligament between my thumb & 1st finger. Interestingly, I was going for treatment for TMJ at the same time. The Dentist treating me had been diagnosed with Sjogrens 2 weeks before me and had the exact same issue. We were both going to the same orthopedic doctor. The Doctor gave both of us the same options. Surgery to create a new ligament from another part of our body or a brace. Neither of us opted for either of these. Eventually I had a pain blocking device implanted in my spine to help interfere with the pain signals going to my hands. It didn’t work. Eventually after the ligaments were completely dissolved the pain stopped. Peripheral neuropathy is also a symptom of both Sjogrens & Lupus which I have. However, this is the first post I have seen referring to the hand pain. It was excruciating. Both of these diseases also deteriorate your joints and spine. Last year I had a full reverse shoulder replacement on my right shoulder and I am now having issues with my left shoulder. Operating on my left shoulder is very difficult because of breast cancer and ancillary node dissection on my left side which caused lymphedema in my neck and face. The lymphedema was not in my arm like most breast cancer patients but appeared after a pacemaker/defibrillator was implanted under the collar bone on the left side. My spine also has degenerative disc disease and stenosis. My neck is fused. The pain from my spine refers down to my right hip. I have received steroid shots for this in the past but had to stop because it caused unmanageable glaucoma.

[OldTed60]

It could be large or small fibre neuropathy but you’d need an EMG and maybe a neck MRI to confirm. Both types of neuropathy can occur in Sjogren’s for sure but also in Lupus perhaps. I have had this as one of my main Sjogren’s symptoms in the past along with same in legs and feet. I had many tests at first to exclude MS etc and am now diagnosed with multiple conditions - so it’s thought to be multi factorial in my case. I also have Erythromelalgia which is thought to be the cutaneous manifestation of small fibre neuropathy and is very painful but also causes numbness, red hot burning skin and swelling. My main rheumatic autoimmune disease is Systemic Sclerosis but I have hEDS / HSD and moderately severe osteoarthritis of the spine, particularly affecting my neck.

[Beeswax15]

This is an interesting thread. I suffer and have done for years with painful numbness and throbbing in both hands and my right lower arm. Infrequently also in my feet.

I have a neck and cervical stenosis, so just assumed it was that.

I was diagnosed with Lupus & Sjogrens last year after 18yrs for symptoms.

Im now thinking my numbness is linked to this .. I’ll ask my consultant at the next appointment.

Worryingly my 12yr old son also suffers with the numbness, has done for a couple of years … maybe I should get him checked too 🤦🏽‍♀️

This condition is the gift which keeps on giving.

I hope you get some answers … please keep us updated.

[Sickofbeingill]

I will. I appreciate everyone's opinion and input.

[PURPLECROCUS3 in reply to Sickofbeingill]

I saw my GP a couple of weeks ago because of pain ,swelling in my shoulders and down ,my arms,also pain i my elbows when leaning on them.GP said "nothing wrong with your shoulders",there is because they do not sit in the socket,are painful and for 5 years have had carers .I have all the symptoms of Lupus and wondered if I have sjogrens' too.Have scoliosis in lumbar spine and degenerative spine .GP won't make diagnoses so tomorrow am going to demand referrals.

[Brackensmum]

Hi, I also get this when I'm having a flare up. I believe it's called peripheral neuropathy. I got it really badly during my last flare up, I'd wake at 2.00 am with incredible joint ache and hands that felt like two pieces of dead meat. People think how bad can numb hands be but it was honestly the most awful feeling! I was prescribed 30mg a day of Prednisolone which I took for 5 weeks while waiting for the hydroxychloroquine to kick in and this did help but I had to split the dose between morning and lunchtime otherwise I still got the neuropathy at night. Eventually it did go away thank goodness. Speak to your GP or Rheumatologist and get some help for this.

[Jerg]

I have the same problem but not sure I will speak to the consultant on my next visit