[TikkiRo]

I've got multiple rheumatic conditions (Lupus, SJS, FMS, MPS, OA, etc), but all have been relatively mild until the past 3-5 years. My biggest problem has been initially right upper arm pain which when it first began was extensively investigated with bone scans and an MRI, neither of which showed anything. That first "attack" actually settled down after a few months but then recurred just over 8 months ago. This time, however, it's been getting progressively worse, and is now affecting both upper arms. Pain is unbelievably excruciating overnight every single night, despite my already being on 20 mg of Oxycontin and 150 mg Lyrica. It had responded marginally to a heat pack (Thermacare ones which go directly on the skin) 2 months ago, but now even that's no longer helping. The pain does ease off once I get up and move my arms around, (which also helps marginally overnight), but is just horrendous to deal with each night. It kicks off about an hour (if even) after I settle down, and will ease after I've moved around for a few minutes, but kicks in again after another 30-40 mins, all the way through the entire night, peaking in the early morning.

I'm not sure if it's purely anything to do with lupus, but am convinced it's caused by ischemia to the muscles, as I had bony infarcts diagnosed 1-1/2 years before all this began. I'm very underweight and have no vascular risk factors otherwise.

If it is as I suspect, does anyone know of any possible treatment I could request, and/or whether it would be worth seeing a vascular surgeon?

 

[lazylegs]

I have had pain in my upper arms but it has never gone away when I got up or changed positions. Sorry I can't help you on this one. You should definitely keep after your doctor to find the cause.

Take care,
Lazylegs

 

[KarolH]

Tikki,

It almost sounds like Neuropathic pain and possibly a EMG (nerve conduction study) should be done to rule out neuropathy of sorts.

I think you need to make your doctor award of what is going on and possibly a visit to a vascular doctor for some venous doppler testing may be a good idea.

Also, Lyrica may not be working any longer and you may need to switch meds. Possible a Neurontin or something else, not sure, but you really need to speak with your GP and see what they suggest.

Sorry your pain is so bad right now. 40 mg of pain meds should be doing the trick???

 

[TikkiRo]

Not neuropathic either

Sorry - should have said I'd had an EMG done before and it only showed up bilateral carpal tunnel which I've since had resolved through surgery - unsure if I could honestly cope with the idea of having another EMG done as the last one was hugely painful too, but will certainly run it past my GP and see what he thinks. My gut feeling is still with the concept of ischaemia only because of the fact that it's purely nocturnal pain or pain at rest for more than 30 mins, as that's the only time I'll get it during the daytime (if I was reading a book and not overly moving the arm around for e.g.).

Thanks for the suggestion of switching the Lyrica tho as I've been on it now for 4 years so may well indeed be time to change it - should have thought of that myself given I'm forever telling my forum members (fibromyalgia) to do that with their meds, but laughably never thought to take my own advice :lol:, so will suggest that as well. What I don't want though is going onto such high med doses that I end up housebound again - that happened in 2006 when it was last really bad and I was on high doses of fentanyl, and it was a miserable 8 months I can tell you.

I'll run all this by my doc this week I think and see if he'd be willing to refer me to a vascular surgeon and take it from there.

Appreciate your responses though - helps me clarify what I need to do.
Thanx, Romayne

 

[KarolH]

Good luck and let us know how you make out after chatting with the doctor.:wink2:

 

[Jesse88]

I have also had arm pain over the years, at one point my left arm was so bad I was seriously considering amputation rather than live with it indefinitely. Fortunately, it stopped after a few months of Bextra and neurotin. I continued to have a similar, but less intense pain in my left arm and then later my right as well. It turned out to be related to the lupus and/or Sjogren's. The only way I know this is because the pain has stopped since I've been on Plaquenil, MTX and now Imuran. So in my case what was needed was treating the underlying cause, not just trying to treat the symptoms. That may be what you need too. It's time to discuss your pain with the doctor and decide if you need to try a different approach. God bless, I know how you're suffering.

 

[TikkiRo]

Update..

Thanks for your insight. You're probably quite right on your assessment that I need to get the underlying problem dealt with, as my GP really feels it may not even be a true ischaemia or if it is, it's at microvascular level which is notoriously hard to treat. However, I've been on Plaquenil before but haven't had much success with it for alleviating whatever symptoms I've had at the time - I'll have to check back as to whether I was on it the last time I had this problem. Whereas before, it did go away, as yours did too, the difference this time is that it's not just one arm, but both, and I've a lot of stiffness involved overnight too, and I feel that it's not only a lot worse than before, but is also progressively worsening which is frustrating. I'm not due to see my Rheumy before the end of August, but am going to request a cancellation in the vain hope I might get in sooner, tho I doubt his attitude will be that my lupus is mild, and he's already investigated this problem without any obvious reason for it showing up!

My GP has, however, offered me acupuncture treatments which I'm going to have a try with as it's always possible that something like that might just alleviate the problem to some degree - if it's done well at least. Can but try !

Thanks again, and I'll keep you updated if I get any better resolution on it.