exercising and massage and scleroderma..

[Debbie star]

Hi, just wondering what people are finding re massage and exercising??

I have had a few massages lately.. I have a lot of pain in front of my shoulders and makes it hard to lift my arms (pain) to dress myself also the stiffness…
Plus a lot of other aches and pains…

Also whether or not to exercise painful wrists and fingers where the skin has tightened and the fingers are curled??

The last massage i had seemed to make things more painful.. so i am really not sure

I am wondering if whether as i get further into the AP (6.5 months so far) and if things start reversing my stiffness and tightness will go away??

has anyone any thoughts?? would be greatly appreciated

Debbie

[Krys]

Debbie,
I don’t have SD, so can only share my experience with massage. I used to take it a few times a month, usually in a round of 3 within one week (each massage was a different modality), then a 3 weeks break. It always made me feel very tired, often very painful for a few days afterwards. Then I would feel great!
The reason for a worse feeling is that usually toxins from muscles and fatty tissues are released and the body has to work on getting them out of the system.
Hence, gentler form of massage may be a better choice.
Doing detoxification after the massage should be helpful.
When there are detoxification issues, a gentle massage is the only option.
I think it was Kate who wrote about soft tissue massage aimed at speeding lymphatic draining. I may not remember right the specifics, you may want to search the Forum for the posts relating to massage. Kate has achieved a remarkable improvement with her SD! I think she also uses acupuncture and posted an excellent solution to make it affordable to all: getting it at any Eastern / Chinese / Asian Medicine College (the names often differ). As students doing it are usually supervised by their professors, it is a great option.

…whether or not to exercise painful wrists and fingers where the skin has tightened and the fingers are curled??

I read that heavy exercising is counter-indicated with stiff, painful joints in RA. Don’t know about SD. When I tried to do that, my stiff joints were making loud rusty metallic creaks and it HURT! I hope you receive better advice, to me it seems that rubbing/massaging them gently with Coconut oil (unless it should not be used in SD: I do not know) would be helpful. I bet sending them love and caring while massaging them, will not hurt at all and I read accounts when people said it greatly helped. I don’t know if applying heat would help in SD. Maybe not when there is big inflammation? Maybe FIR sauna or FIR hand held devices would be useful?

I am wondering if whether as i get further into the AP (6.5 months so far) and if things start reversing my stiffness and tightness will go away??

I certainly hope so! That’s what most people find out and if not, some further adjustments to the protocol need to be made.
Have you tried going gluten free and eliminating all foods that cause allergic reactions? AP has helped me with stiffness, swelling and painful joints immensely. But if I eat any “forbidden foods” (for me milk, gluten, corn, any fruit sprayed with food dyes, banana, potato, to lesser degree eggs and all starches if eaten more than a couple of times a week) there’s pain, some swelling and stiffness + more autoimmune reactions against brain, eyes, heart, lungs, kidneys, pancreas. I could eat everything before I got sick. AP diminished the stiffness, swelling and pain. Taking care of Candida and weekly acupuncture has helped even further with food sensitivities. Heavy reactions greatly diminished, mild reactions got milder. But they are still there and until I completely heal the gut, they may keep showing up.

Warm wishes, Krys

[kater]

Hi Debbie and Krys
speaking only from my own experience with SD, I find the massage and exercise very helpful. If I overdo working and things with my hands they will flare up, but I find I must exercise my hands (squeeze balls and things) and stretch my skin vigorously to keep mobile. I go to myofascial release regularly and it is very painful, but loosens me up a lot. Also dry needle triggerpoint therapy that is even more painful but works. I was doing lymphatic drainage massage and I think that helps with detox. Yoga or any self massage techniques are great too. I have only done one session of Tui Na, chinese massage but really like that. I think it is very good for the circulation. I also use my whole body vibration machine on high speed for lymphatic drainage and massage. IMHO any type of stretching or massage will be good for the tight skin of SD as long as you go easy and remember to detox after as I do think the massage will release embedded toxins. FIR sauna also helps me a lot, and I always use coconut oil on my skin which is now so dry and sometimes itchy. My stiffness and tightness is going by leaps and bounds (10 months into AP) and I wish the same for you debbie star. Did you get tested for Lyme? That has really speeded things up for me since being on the Lyme treatment.
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Debbie star]

Hi Kate and Krys, thankyou both so much for your wonderful words of support!!
😀

I will look into all of it,
I think i got a bit overwhelmed by things

Kate i am so wrapped that you are doing so well now,
I have gone up to 100mg BID every day (minocin finally this week, still a bit unsure as to whether to do that much or not..

I went off the LDN as it was knocking me around quite a bit!!
Very dissappointed..

Have just started taking ALA hoping it may help for pain and circulation (I noticed Krys you are taking it ~ how have you found it?)

I am still having terrible ankle pain /feet (if i could only get rid of that i think i could cope a lot better)

I have been talking a lot over here in Aus to lymme suffers and drs, so hope to get some tests done next week

one of the ladies is taking minocin 100 BID every day and i think it is ramafin (maybe like your rifampin??)

Not sure, but im onto it!!!

Thanks again both of you

[Krys]

@Debbie star wrote:

I am still having terrible ankle pain /feet (if i could only get rid of that i think i could cope a lot better

Going completely off gluten (in genetic predisposition towards AS, you need to go starch free. Diets on healing the gut are all starch free, sugar free) will most probably stop the pain or greatly diminish it.
If not, finding other triggers will.
For me the worst trigger is dairy, corn (even as starch content in doxy) and food dyes. Gluten comes next followed by eggs and banana. I can eat ripe tomatoes but no other nightshades.
Many have found abx + diet to be crucial. Healing the gut often comes right next.
Krys

[richie]

Hi Dr T suggested light excercise BUT any pain -stop excercising –I too had very bad wrists and contractures –it was suggested I use physical therapy which really didnt help when things were real bad –the one thing that gave me some relief was paraffin baths for my hands –felt good for a few hours —In scleroderma the tendons can get stiff –and the possibility exists that they can easily snap with excercise –so be very careful –on the optimistic side -I had both wrists very swollen for about two years and bad contractures for about 3 years or so —Today all is normal —-the best thing I did for my fingers was to keeep using them –flexing etc –good luck –
richie

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