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As many know I have RA 3 1/2 years. I was talking with someone else who has RA and mentioned how the skin on my hands hurts to the touch, a sandwich baggy or bedsheet weight will almost bring me to tears. She said this has never happened to her, it got me looking thru some old ra books and I don't see any symptom like this mentioned. Does anyone else experience this? It isn't always, it was much more prevalent early in my disease but it does come and go, being here the last couple of weeks. Anybody?
Thanks,
SueI am reaching one year on agressive RA. One of my first symptoms were that when the sheet touched my feet I would cry. It felt like a burn, a heavy weight. I am still swollen and just last night my calfs hurt when the body pilow or blanket touched them. I think it may be the skin stretching from inflamation that causes this excruciating pain. Though not always does it appear to the eye that they are swollen. There are times I can not put my hands below the blankets because the sheets are too heavy.
Has gout been ruled out?
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
As for me, Gout has been ruled out. I thought I had gout cuz my big toe area would be red and looked bruised. But the test was negative. It is more like from the skin being too tight.
My husband's gout test was always negative, too. He suffered for years with swollen wrists and ankles. The rheumatologist finally put him on Allopurinol for gout and he hasn't had a problem since.
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I don't think I have ever been tested for gout. But my the swelling in my wrists hasnt' come down with prednisone, methotrexate, enbrel or minocycline.:headbang:
Sue
Hi Sue;
I have a similar problem but did figure it out.Fot me it is neuropathy,often I can't stand to have a sheet even touch my tail bone much less lie on my back.Often the vibration in the car will set all my teeth aching which is even worse.I know that it was the prednisone and methotrexate that I took many years ago that caused it.After stopping them the pai slowly subsided but still comes back to haunt me at times.
LynneThe swelling in my wrists have never came down either. I did 20 mg prednisone for 5 months ( and gained 37#) then MTX for 4 months now and doxy for 3 weeks. Starting enbrel soon, was looking forward to that to remove the swelling on wrists and legs.
Prednisone didn't help my husband either. Vioxx did–he'd be good for awhile, then get the swelling again, do the Vioxx, be good, etc. Indomethacin is usually prescribed for gout. I had one full-blown attack back in 2003 in my right ankle; with all the grief I've had with Lyme/RA, the pain doesn't even come close to gout pain. I was prescribed the Indo and was feeling better within hours.
Because of my having gout, my NP put be on Allopurinol some years back. Really helped with the joint pain, but a month in and I was running a fever and layers of skin kept peeling off the heels of both my feet. May have been a herx; at that time I wasn't aware of herx's and my reaction frightened me and so I stopped taking the med.
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I was prescribed and still take Indomethacin. This was from a nurse practioner who I went to after moving to Oregon in the attempts of finding a new rheumy. Strange that she would prescribe that.
Anyway I just asked the rheumy if I could stop it because it is not working for inflamation. I take 50 mg 2 x day and in 6 months no change. I feel better about stopping it now.
If the Indo isn't working for you, I wouldn't take it either. I was on 50 mg 2x a day; was able to drop my morning dose in December and hope to drop the evening dose soon.
Have you tried the enzyme formula, Wobenzym N? It is supposed to be very good at reducing inflammation.
http://www.modernherbalist.com/wobenz.html
The botanical, Cat's Claw, is a potent anti-inflammatory. Within a week of starting it, I was able to drop my morning dose of Indo.
Good luck to you–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Not sure. My husband is also on AP, and has recently complained of a sensitive area on his calf. He says it hurts even if the sheets brush up against it.
Yes this has happened to me and the pain and discomfort is formidable. I've had it on my legs, on my hips, on my stomach. I asked my rheumy about it and he said it was related to the RA.
He gave me a pity sort of look and it scared me so I didn't ask for any more details and he didn't give them.
Since my RA has improved (not cured but improved) on AP, those painful skin feelings have improved significantly but I still get it to some extent…it is currently affecting one of my calves.
My grandfather who never had a real diagnosis except for possible polymyositis complained of this as I recall.
My mother has had neuropathy (burning sensations) in one leg for almost 20 years…she's been diagnosed with arthritis and spinal stenosis but doesn't test positive for RA or Lupus or anything else.It's a drag….but in my case helping to lessen the RA has lessened the severity and occurence of this.
Hang in there.
– – whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
My skin felt achy like I had the flu, my hair and all was sensitive. I don't feel that way any longer.
My great grandfater had RA and they built a box around him when he became bed ridden so that the sheets would not touch his skin. It had to suck royaly back then to have this junk and hardly anything to treat it like we have today. I do count my blessings although I would gladly get rid of the one thing that makes me count my blessings.
Hi Sue,
When I was at my worst, everything from the inside out hurt. My skin was so sensitive…felt like a stinging, burning sensation, especially on my forearms and upper arms. This increased with herxing, but eventually went away altogether and is no longer a problem. My guess is that the high levels of systemic inflammation are what caused it for me, along with whatever was going on neurologically with my Lyme mix. It's miserable and really sucks. :crying:
Where is your hand pain? Topside or palm side? Bartonalla, a coinfection of Lyme can cause sole pain and, when I've done websearches on “sole and palm pain” in relation to bartonella and Lyme, quite a few people on various support boards comment on this being symptom of this coinfection. May not be applicable to you, but just thought to mention it, as sole pain, in particular, is pretty classic for bartonella.
Peace, Maz
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