[frogga]

Hi

I went seriously downhill a month ago and my arms broke the extension spasms they had been held in for over a year and are now twisted across my upper chest/ neck and has led to me losing the use of both my shoulders. (Before they got worse I couldn't use the hands or the arms but I could use my shoulders to use my power chair etc). This now means that I am totally dependent for EVERYTHING and it really sucks - I had so little independence anyway, but I've now just lost any independence. The problem is that we are trying to "rescue" one arm by using a splint to extend my right arm out to 90 degrees but because the spasm is so strong I get dreadful pressure marks all down my right arm and after taking the splint off tonight we realised that even with a bandage underneath it the skin is becoming raw in places. Also the skin on the inside of my elbows are breaking down as well. I know that because of the RSD my skin is worse anyway - but this is still so frustrating. If I can't wear my brace I have no hope of being able to stretch my arm enough to ever regain function in it but yet I can't wear my brace if my skin is breaking down (the RSD leads me to developing lots of ulcers). Also since I started wearing the brace I have developed pretty bad pitting oedema in that arm.

So - any advice on retaining skin integrity? The carers wash my arm twice a day, I spend 2 hours with the brace in the morning, 3 in the afternoon, we put material between my upper arm and my lower arm, wear arm warmers from my humerus to my fingers. Can't think of anything else.

It is so frustrating though! However I am lucky to have awesome mates - 3 of them in my flat now know how to hoist me and get me in and out of bed (so they can now get me up after the carers put me to bed! though seems abit weird to me as the carer lives in the room next to mine - but hey!)...

Any help would really be appreciated.

Thanks

Frogga xxxxx

[Jomar]

Drs can't find a med or some other thing to release those spasms and lock ups at all??

This is off the topic of the skin part of your question, but have you ever read about with EFT ? --Emotional Freedom Techniques--

http://www.emofree.com/
http://www.emofree.com/downloadeftmanual.asp

It's basically tapping on certain points in a rhythm and a sequence - another person can do the tapping for you-

It include some phrases but I didn't even use them when I used this for my RSI in 99.

I know it sounds really strange but RSD is pretty strange too right??
It supposedly helps to reprogram the body systems.
No side effects from trying it, unless the tapping is painful for you.
In a section on the site there is info on tapping by proxy- or some of the therapists can work it over the phone.
Or maybe i saw that in the emailed newsletter I get from them.

[dianelori]

Frogga,

Skin breakdowns occur from alot of reasons, but a major one is from poor circulation. If the skin doesn't get enough oxygenated blood, it will start to die, hence the ulcers. A few things you can try would be massages of the upper limbs, very slow, using a good lotion enriched with vitamin E and Aloe. We use a "udder" cream on my mom. It was originally made for cows teets but it works wonders on the human skin! My mom gets terrible skin breakdown from her stroke and this stuff is great. It comes in a jar that is decorated with cow spots and says something about udder cream on it....something like "udderly smooth" or something similar.

Another thing you might try is sheepskin inside your splint. It will keep the splint from rubbing your skin raw.

As for the spasms, have you considered botox injections? I hear they work well. My cousin has been having them done starting from his hands up to his shoulders and for the first time in over 50 years he can finally move his hands and fingers!!

Hope this helps a bit........good luck and keep us posted on how you're doing!


Dianelori

[frogga]

Hi Jo

I have tried EMT with my (now ex-) alternative medicine doctor (he used a range of osteopathy/ acupuncture/ hypnotherapy/ chinese medicine/ meditation/ reflexology/ breathing exercises/ crystals/ chanting/ EMT/ magnets/ light therapy and homeopathy. He did help me learn how to deal with the pain alot better and how not to panic when my RSD was going insane (I get RSD fits which are incredibly scary until you get used to them). Although the EMT didn't do anything major with me it really helped my mum who was recovering from a back injury.

None of the drs can really find a combination of drugs which controls/ eliminates the spasticity (from the secondary dystonia) - the ones I take at the moment help abit with it (as soon as I come off them or reduce the dose then I end up with every muscle tightening up and pulling me in odd directions rather like a pretzel) but don't cure it. The spasms have also caused loads of joint/ muscle/ bone/ ligament damage from being ripped to pieces. It's just so frustrating!

Thanks Jo - did you find that EFT helped you?

Love

Frogga xxxxx

[frogga]

Hi DianeLori

Thanks - I'm not sure I'll be able to get the cream over here but that's a great idea!! (I live in the UK), however I can probaly use something like nappy cream or something? (closest I can think of to udder cream!). I live in the wrong area to be surrounded by pastoral farming! It's a good idea to wear fleece if my skin can tolerate it - I'll give that a go tomorrow.

I've been having botox for the last 18 months or so (? dreadful memory) and have it in my thumbs, neck and shoulders (the spasms dislocate my thumbs, dislocate my left shoulder and my neck is pulled to the left really badly) and I don't think I'm allowed any more places done - it's so stupid having to choose which joint to "save"!!. Botox is amazing - having lived with dislocated thumbs for over a year I had the injection and within a fortnight they were 90% spasm free and back where they should be, instead of backwards over my hands.

The spasms are just infuriating though because I can't use my power chair at the moment as someone else has to use the controls which is horrible!! especially as I'm at uni and so have to go out and manage to get round campus somehow and also my lecturers keep forgetting that as I can't move I can't signal when I want to say something or ask a question without screaming it across the lecture halls!

Thanks

Love

Frogga xxxxx

[tayla4me]

Hi Frogga,

It is an awful problem to have My skin is a constant source of concern for me too and up to this point have not been able to find anything in the long term that works.I am so sorry that this has been added to your already intolerable situation.
With the skin being so fragile sometime the vigorous rubbing and massaging can be detrimental to the skin integrity. In fact where Pressure area care in nursing used to involve frequent massages with all sorts of lotions and potions it is not done anymore as they were finding that just changing position was the best saviour for skin.
When your carers wash you I would not use soap as that can be worse for your skin than not touching it at all. Massaging with some very natural oil product like olive oil maybe better perhaps on alternate days.
I do believe that sheepskins (as long as you have no allergy to wool) might be your best option. There are some special splints now available for people to sleep in that are like those blow up splints used for fractures--this keeps any pressure off your skin for as long as you can tolerate them.
I probably haven't told you anything you don't already know but I DO wish I could help you

Love Tayla



Frogga,

PS- Any Vet or farm supply will have the "udder cream" We use it here often on sore human nipples too.

[mollymcn]

I've no advice, just a long, sympathetic, pain-free hug. I wish my magic wand could take away all the pain...
Molly

[Desi]

Awwwwwwwwww Frogga!
I am so sorry that your hurting so!! I too like the idea that DianeLori said about using the sheep skin. How about some baby oil also? it is very gentle to the skin. )))Hugs Frogga))) Love ya~Desi

[sue k]

Hi Frogga,
The stuff Dianelori is great stuff. Here its called Bag Balm. It comes in a green can and works on everything from chapped skin to diaper rash. I've used it on my kids for years. I hope you can find it.

Sue K

[ali12]

Frogga - its Alison here,

I am so sorry about your arms/shoulders. I know how frustrating it is when you have to depend on someone to do things for you.
You will probably be aware that my Physiotherapist tried to splint my arm, but the spasms were really strong so my arm stayed in a fist, and when my physiotherapist took the splint of she could not get it back on!

How to retain skin integrity, also known as Xerosis

In general, there is a twofold approach to the treatment of xerosis: (1) minimizing irritation and (2) moisturization.2 Patients should be instructed to limit bathing, especially in soapy baths that strip oil from skin and leave it chapped.2 While some experts recommend bathing once daily in warm water and mild soap, others suggest bathing only every other day and supplementing with sponge baths of the axillae and anogenital areas, since these areas are rarely affected by xerosis.1,2 Patting the skin dry instead of rubbing can also help. Detergents, rubbing alcohol, and skin care products that contain alcohol and other drying agents should be avoided if possible. Irritating materials (e.g., wool) should not be placed next to the skin.1

In general, moisturization through frequent and liberal application of emollients is recommended, especially after bathing when water can be trapped in the skin with an occlusive agent.2 Moisturizers have water-retaining and lubricating properties and exhibit weak antipruritic, anti-inflammatory, antimitotic, and vaso* constrictive effects, which make them suitable treatments for mildly eczematized xerotic skin.2 The generous and frequent application of moisturizers that contain lanolin or white petrolatum effectively traps and retains water in the skin.4 Scented emollients are not recommended, to avoid skin irritation and contact sensitization.1 Emollients have few side effects, usually confined to contact dermatitis, folliculitis, and miliaria (cutaneous changes associated with retention and discharge of sweat).2

Seniors should be informed that while over-the-counter emollients vary greatly in quality and cost, there is no strict relationship between the two.1 Checking labels for ingredients known to be useful in the treatment of xerosis (table 3) should be encouraged to avoid confusion from misleading claims and advertisements. Some additives in expensive moisturizers, such as collagen and elastin, are used for marketing, not
medical purposes, while other additives, such as vitamin E and fragrances, may provoke an allergic dermatitis.2 An elegant, aesthetically acceptable topical preparation may be advantageous for some patients who may otherwise not adhere to a regimen that requires a thick, greasy ointment (e.g., petrolatum) to be applied under their garments.

Hope this helps you
PAIN FREE HUGS
Alison