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this last week or so the inflammation in my wrists and hands have gone way up. i cant even turn my wrists upward to collect change from someone. i feel like i have wrist guards on! very frustrating. what is there to do about inflammation? getting a hold of my dr is like getting ahold of the president!
also is there anything we can put on our itchy tight skin? for some reason im up alot at night cuz it bothers me so much! any answers?
Are you taking any anti-inflammatories? What is your diet like? I found that really sticking to an anti-inflammatory diet helped when I had a lot of inflammation. Sorry you're having problems getting in touch with your doctor. Are you talking about a doc in your area, or Dr. F? I'll be at Dr. F's office on Monday, and would be happy to pass o a message to contact you. I can also call him tomorrow, and talk with his nurse or PA. PM me if you want me to do this–I'm more than happy to.
When my skin was obnoxiously tight, I used castor oil packs with heat, which softened my skin. When I had terrible itching fits last summer, I used aveeno non-scented lotion, mixed with pure glycerin (you can buy it at walgreens or cvs) liquid. Definitely took the edge off, and I use it to this day, and haven't itched since. Your itching could be detoxification from die-off, your skin loosening underneath, or just secondary to scleroderma, which is common. I did dry brushing of my skin, and took some detoxification enhancers, lemon olive oil drink, and liver support supplements, which seemed to help me.
Sorry you have so much swellling–you should try to get that under control because the inflammation barrier needs to be broken for the antibiotics to reach their target. I remember those bad inflammation days–they were terrible:crying:
I'm sure others will chime in with some advice.
Take care,
Maria
Sara,
The itching is a common complication of SD, and many have found nighttime relief with Benadryl. Like me, others have terrible burning sensation that will disrupt your sleep as well. I was Rx'd Lyrica and it worked great for me. I was immediately able to get a decent night sleep, and as a result SD's debilitating fatigue began to lift. The AP may also have been starting to kick in as well. Never the less, my Neurologist at The Mayo says that the itching and burning are both caused by the skin nerves being affected by the SD, and to that extent the Lyrica is effective for both complications. I am aware of a couple of other SD folks who had severe itching and found relief with Lyrica. This may be worth looking into now.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi – Greetings from Western Australia,
Inflammation is a big problem with SD sufferers and needs to be controlled to allow good tissue penetration of the AB's. I too have SD and only just recently after a visit to a naturopath and DR together, I was told that diet is going to be a very big part of getting better. Well within 1 week of my new diet (on it now for 4 weeks), and for the first time in 6 months, my legs and feet went down. Yee Ha :roll-laugh:. Almost hard to believe and if I can encourage you to take a serious look at an anti-inflammatory diet to knock the old inflammation for a six. I have problems as well in rotating my wrists and stuff like that, but I'm so pleased with a little good news. My face is down and I can see veins on my feet. I look forward to hearing from you when your inflammation bites the dust.
Kind Regards
Wayne
Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.Hi Sara,
Most people with SD have hypercoagulation (thick, sticky blood) which not only contributes to inflammation due to poor circulation, but is very dangerous and puts you at risk for stroke. You could either be tested for this, or just talk to your doctor now about taking steps to thin your blood. I've had amazing results with Neprinol and sauna to thin blood and improve circulation. Seriously, I never even think about Raynaud's anymore and seldom have inflammation (unless I've eaten carbs/sugar).
The itching is part of SD and some of it is good itching as the collagen breaks down, you feel like there are bugs crawling under your skin. Another argument for detoxing through sweating in a sauna. Make sure you're drinking lots of water throughout the day.
Try to stay positive, you CAN turn this around.
Take care…..kim
thanks everyone for all the helpful info!! i will try each of your advices and see how it goes! thanks again for all the support! really! im very blessed for this discussion group!
[user=40]Kim[/user] wrote:
Hi Sara,
Most people with SD have hypercoagulation (thick, sticky blood) which not only contributes to inflammation due to poor circulation, but is very dangerous and puts you at risk for stroke. You could either be tested for this, or just talk to your doctor now about taking steps to thin your blood. I've had amazing results with Neprinol and sauna to thin blood and improve circulation. Seriously, I never even think about Raynaud's anymore and seldom have inflammation (unless I've eaten carbs/sugar).
The itching is part of SD and some of it is good itching as the collagen breaks down, you feel like there are bugs crawling under your skin. Another argument for detoxing through sweating in a sauna. Make sure you're drinking lots of water throughout the day.
Try to stay positive, you CAN turn this around.
Take care…..kim
Kim, Sara, All,
Am rushing and haven't been able to spend time reading lately (out of town, deadlines, etc), but a thought popped into my head — a thought based on constantly reading how important it is (it seems) that no matter what we are treating, at the top of the lists seem to be using such as Aerobic Bulk Cleanse or psyllium husks… which seems to help trap and expell all kinds of wastes in the body and help eliminate those traveling through our bowel. Many respected doctors, scientists, researchers have recommended use of fiber to help cleanse, and even some Rx meds (R. Shoemaker) has recommended use of such as an old drug (Cholestyramine… though this can be a toughie for some, the psyllium, etc. would be my own choice over the CSM for such as this, or daily 2 to 3 tablespoons of freshly ground flaxseed). My concept of this is that the fiber helps enhance a good environment for good flora to flourish in the gut, and to usher (even force) the trapped toxins out of the body… instead of these toxins being “loose” enough in fat soluble toxins to be re-siphoned back through the body — the body does re-siphon fats/toxins back through our body's naturally… when it can, for conservation.
Hope the above makes sense! Kim, if it doesn't, would you “narrate and clarify” what I said? By now, you probably can read my mind. You and I have traveled a few “roads” together!
Have missed all of you, and wish you well.
Best,
AFLike others here, I found Benedryl to be a lifesaver at night as it calmed my itching and helped me sleep. I went through a bunch of lotions and cremes and found Eucerin creme (not lotion) to really help when put on immediately post bath or shower. The creme was much better than lotion, for me.
The wrist thing was truly annoying! I'd put my hand out for change, and not only would it not turn, but my inability to close my hand meant the change just fell to the ground. Finally getting wise, I got a small plastic bowl to put in my car and just stick out the window for change at a drive thru. I'd get change in person just placed on the counter and sweep it into my purse.
I tried to control inflammation as best I could with naproxen, as recommended by my doc. Of course, diet, plenty of water, fish oil, milk thistle, lemon-olive oil drink, etc were also included.
I should mention…… it gets better! 🙂
Hi Maria!
What is the olive oil and lemon drink? I grew up with my mom putting olive oil and lemon juice on vegtables, so I don't even think twice about it. But I'm curious about why drink olive oil and lemon juice, is this anti-inflammatory?
Margaret
Hi Margaret!
I use the lemon olive oil drink as a detoxification enhancer for my liver, specifically. You blend a whole organic lemon, 8-12 oz of water, and a tablespoon of olive oil. Strain it, and drink. It really helps me during the week of my iv's, which is when I do it daily. Otherwise, I try to do it a couple of times each week. There's lots of info about it on the web. Just google lemon olive oil. Here's a few links I pulled up:
http://curezone.com/foods/lemonolive.asp
http://thedetoxspecialist.com/blog/detox/liver-detox-%E2%80%93-the-morning-lemon-detox-drink
Maria
…………and here is another from the Keep Hope Alive site which explains the rationale for how it works. It was discovered as beneficial for those with AIDS and suffering from neuropathy. Lynnie
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Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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