POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Jeffreyj on April 30, 2007, 02:14:31 am
-
My wrists and hands have been feeling week for the past few months. I first noticed when I'd try to get up off the floor, my wrists would give out really easy. They would not have the strength they used to. I thought nothing of it until last Monday.
I woke up, both of my hands and all ten fingers were swollen. I could not squeeze them together. And when I tried to, it felt like both my wrists were sprained. It did the same thing so Wednesday I saw the DR.
He took one look and thought it was some form of Arthritis. He did a blood test for the 4 major ones. He said even if the tests were negative, I may have "Negative Zero" arthritis. (It may have been Zero Negative, sorry not too sure).
Has ANYONE EVER HAD A SIMILAR PROBLEM?
I tried use a broom today, I could barley hold it. I can't write either.
April has been a bad month. I was dropped from by private LTD last week without warning. Now this. UGH!
Here is to a better May!
-
Jeffrey,
Matty the Damned knows only too well the misery that is arthritis. It's a terrible, disabling, life-sapping pain and he empathises with you deeply.
Mine was a result of an auto-immune condition that since seems to be in remission. Nevertheless when I was in the worst of it the only thing that brought me any relief (other than cortico-steroids) was a combination of codeine and a non-sterioidal anti-inflammatory drug called indomethacin.
None of these are suitable long-term answers to the pain. Cortico-steroids work by suppressing immune function and so are problematic for HIVers. Indomethacin used for longer than a few weeks will cause ghastly stomach problems such as ulcers. That's a shame because it's very effective at relieve inflammatory pain.
Perhaps less pernicious anti-inflammatory pain killers like ibuprofen may help. Taken judiciously these can be used over longer periods of time with less likelihood of gastro-intestinal problems. Also topical salicylate ointments or linaments may bring some relief too.
MtD
-
You have my sympathy as well, Jeffrey.
Mine is severe in my toes and the ligaments at my achilles tendons, and less severe on a couple of fingers. It's almost perfectly bilateral in my case. I tested positive for the RA factor, but the doctor is still unsure whether it's rheumatoid or psoriatic, and for the longest time he would tell me it had nothing to do with HIV. (He's recently changed his tune on that one.)
Find yourself a good rheumatologist. There are a lot of new treatments. Most people have to jump through hoops before insurance will cover them (because they're wicked expensive--more than all my other meds combined), but it's really iimportant to catch it and get it under control before it does permanent damage to your joints.
I've been on Humira for about 10 weeks now. It's resolved almost all of the swelling and pain, and it's helping a lot with my energy level as well. I had to go through a six-month cycle of methotrexate (and fail) before my insurance would cover the Humira, but it was very much worth it for the results I'm seeing now.
-
Hey Jeff,
I'm right there with you. I can't clench my right hand without causing serious pain. My middle finger, the one best used in traffic (LOL) ;) is the worst culprit so far, but some of the others aren't far behind.
I am seeing the doc Wednesday and it is one of the problems we are going to discuss.
Putting my hands in very warm water (as warm as you can stand it) gives temporary relief. I also use about 2,400 mgs of ibuprofen a day.
Matty mentioned the creams. There is one I use called Sore No More (dreadful name) that contains capsaicin, the stuff that makes jalepeņos hot. It seems to offer some relief.
My pain seems to lessen if I exercise the joints affected. But that is temporary and as soon as I sit down and relax, the stiffness and pain returns big time.
Let me know what the doc says about yours and I'll let you know what my doc says about mine. Sounds kinky, doesn't it. :D
HUGS,
Mark
-
Matty, Ademas and Mark,
thanks to all of you for sharing your experiences. It really does help to know that I'm no the only one with these crazy things happening to me. I will get the results next week, and I'll keep you posted. I have made some notes on what you all have said. Thanks again for the help.
-
He took one look and thought it was some form of Arthritis. He did a blood test for the 4 major ones. He said even if the tests were negative, I may have "Negative Zero" arthritis. (It may have been Zero Negative, sorry not too sure).
Has ANYONE EVER HAD A SIMILAR PROBLEM?
Jeff:
Your doctor was referring to "seronegative arthritis" which is a term used to describe an arthritis that does not have a positive Rheumatoid Factor (one of the blood tests you had). More specifically, it usually refers to rheumatoid arthritis in a person that is negative for the Rheumatoid Factor (which happens in 15-20% of rheumatoid arthritis patients). Thus, the term seronegative rheumatoid arthritis.
Here's a link to a good summary: http://medind.nic.in/jac/t03/i3/jact03i3p190.pdf (http://medind.nic.in/jac/t03/i3/jact03i3p190.pdf)
As mentioned above, you probably should get a consultation from a rheumatologist to help with the diagnosis.
Gerry
-
Thanks Gerry, that was very helpful. That is what he was trying to explain to me. It all makes sense know. What a weird strange pain it is.
Just when I thought I had everything...
Can't wait to see what is next LoL.
Jeff
-
Well Gerry,
You hit the nail on the head. I was just diagnosed with Seronegative Arthritis.
I am going to a specialist as soon as they will take me.
Crap.
-
I've had arthritis for about 3 years severely now. I know its expensive in US for healthcare but several things have helped me, namely a drug called naprosyn, and one called gabapentin/neurontin, (although the latter can be hard on your stomach). I've also found shiatsu helpful. I really empathise babe, its a bugger, but it IS normally controllable. Keep your hands (especially) moving by squeezing a squash ball (or any other spherical object that comes to hand), and just try and keep your joints flexible with low impact exercise.
Theres a UK organisation called arthrocare, and I'm wondering if theres something equivalent in US as they've been really useful, (and their idea of asking my partner to gently massage affected areas has been a bonus).
Seriously, i've got loads of information, so anything I can do to help...just ask
Yours creakily
Jo
x
-
Painful, swollen joints in the hands, wrists, feet and ankles would respond very well to paraffin bath. Immersion with several layers of paraffin wax evenly retains heat for a considerable amount of time which helps increase the blood flow to the involved areas.
-
Jo and Paolo,
Thanks for the tips. I no doubt will be in touch Jo, as maybe we can learn from each other as I enter yet another challenge in the never dull world of having HIV/AIDS.
-
Here is a quote from a medical text I bought in London,"It now appears that arthritis and arthralgia...are monosymptomatic forms of Celiac Disease." By the way, 'Celiac Disease' is basically wheat and grain caused illnesses. The cure is to eliminate grains(especially wheat) from the diet .
-
Here is a quote from a medical text I bought in London,"It now appears that arthritis and arthralgia...are monosymptomatic forms of Celiac Disease." By the way, 'Celiac Disease' is basically wheat and grain caused illnesses. The cure is to eliminate grains(especially wheat) from the diet .
Love your moniker! :D
I am a Celiac, so I know from which you speak. I have eschewed wheat, oats, barley and any derivative thereof for nearly six years now.
I have felt progressively better ever since I dumped the toxic grains from my diet. I still use some grains, such as rice, millet and quinoa, but I find I use less and less of them on a regular basis.
I use a bread mix that, aside from some rice flour, is made up of soy and fava bean flour and tapioca flour.
It is yummy.
Sorry Jeff, didn't mean to hijack your thread.
By the way, I was diagnosed with trigger finger. Apparently is is kin to carpal tunnel syndrome where a lump develops on a tendon and it catches and doesn't let the finger move.
I received a cortisone shot as a temporary measure. The doc, who is quite cute by the way, said he usually won't give more than one or two cortisone shots for this type of thing because it simply is a stopgap measure.
I will, eventually, have to go in to have the band catching the lump snipped. It apparently is quite successful. I notice that two fingers are now doing it, so I might see the plastic surgeon sooner rather than later.
Just an update. How's your arthritis doing?
HUGS,
Mark
-
Update on my arthritis:
I found a rheumatologist. They gave me a thorough looking over and prescribed 800Mg's ibuprofen (3x/day)
They also ordered all kinds of blood work(results next week) and took x-rays(results next week)
I hate to wake up in the mornings. My entire body feels puffy kind of, and my hands still don't work very well. My fingers are constantly killing me, as are my wrist feet and ankles. I had an injection today for planter facitis. Damn I hope they find out what's going on. I am beginning to feel like a balloon. I'll keep you posted.
This new DR thinks its from an infection of some sort. We shall see what the blood results yield.
-
Got a call from arthritis DR...they said I have elevated liver function (ast=53, alt=93)
Plus there are signs of sacrolitis...She said this is one part pf a bigger picture. She took me off the ibuprofen(800mg's)...I guess I'll know more when more results come in. Not sure what this all means. Still damned painfull though...
-
Jeff-
I feel your pain, literally, as I have an inoperable cervical spine condition and bone spurs. Chronic pain is no joke.
Brent
(Who lives with daily pain levels between six and eight)
-
Update on my arthritis:
I found a rheumatologist. They gave me a thorough looking over and prescribed 800Mg's ibuprofen (3x/day)
They also ordered all kinds of blood work(results next week) and took x-rays(results next week)
I hate to wake up in the mornings. My entire body feels puffy kind of, and my hands still don't work very well. My fingers are constantly killing me, as are my wrist feet and ankles. I had an injection today for planter facitis. Damn I hope they find out what's going on. I am beginning to feel like a balloon. I'll keep you posted.
This new DR thinks its from an infection of some sort. We shall see what the blood results yield.
Hey. I have the rheumatoid variety for roughly 10 years. I took Celebrex with no appreciable improvement until the big Celebrex scare. For several years I have taken a daily pill from Trader Joe's containing MSM/glucosamin/chondritrin and the weird thing is it works better than the old stuff I took without MSM (I know I just read a newspaper article saying it does no good at all, but crappy studies are a dime a dozen). The therapeutic goal with arthritis is to arrest the degeneration and painful swelling. The weird thing is I am MUCH BETTER THAN MORE THAN 5 YEARS AGO---very rare painful episodes, and no real problems most days. So I find my arthritis a small matter to deal with now. One reason you wake up with pain is we all curl up everything when we sleep (think: embryo) and this is the wrong position! Until someone can tell me the dangers, I recommend everyone try my cheap treatment for a few months and wait for progress. 8) -megasept
-
I was just prescribed Tramadol to replace the 800mg's of Ibuprofen. I guess it is easier on the liver. Anyone ever take tramadol before??? I have never heard of it.
Megasept thanks for your input. Glad to hear you are having good luck with Trader Joes. At this rate that very well be my next stop.
-
Hey Megasept,
I tried the glucosamine/chondroitin/msn for about six months. Did absolutely nothing for me.
I tried several varieties, including the liquid (yuck!).
Anyway, my doc told me either it works great for folks or not at all. I guess I'm in the not at all category.
I'm glad its working for you though. Maybe it will help Jeff too.
HUGS,
Mark
-
Mark, sorry to hear your "bad" report. Interesting to hear your MD's statement, which is less than an explanation, ??? but all sufferers really need to hear---treatment works for some and not others. Cest la vie! 8) -megasept
-
Hi All, just an update on my arthritis venture:
I was diagnosed with Fibromyalgia. I am going to have an mri done soon. It is a fancy name for all the muscle pain I've been having over the past year plus.
Keep you posted.
-
If its available and appropriate, I take gabapentin for exactly that
Good luck with MRI, and I've also found shiatsu massage realy helps
xx
-
Hi Tigger, what exactly is gabapentin? Could you give a few details, please? Thank you!
-
Jeffrey,
Sorry to hear about your chronic pain. As far as Fibromyalgia is concerned, I've had great results with my patients afflicted with that by using myofascial release as well as craniosacral therapy. Like Mark's doctor said, treatment may work for some and not for others. But you should not give up. Try to find a Physical Therapist that practices craniosacral therapy and give it a shot. All the best....Paolo