Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Today is the last day of Dystonia Awareness weeks, which is most likely a relief to all the lovely people who are signed up to receive email alerts when I post a new blog as I’ll be going back to posting a couple of times a week. It has been amazing seeing how many people have joined in with Dystonia Awareness week, Thunderclap was seen by over 6 million people which is incredible!

In many of my blog posts this week I have mentioned treatments such as Botox injections, muscle relaxants and Deep Brain Stimulation, however none of these treatments can guarantee relief and are not always accessible, so I wanted to discuss some alternative ways of coping with symptoms. Heat is great for relieving muscular aches and pains that can result from spasms, wheat packs, back wraps and microwaveable slippers are all great products and I use at least one of these three several times a week. TENS machines are also great, I don’t know what I’d do without these. I never go anywhere without one in my handbag and towards my Botox dates they often help keep my neck spasms bearable.

If you can afford alternative therapies I would highly recommend trying Reflexology. I found before having regular treatments that I could not sleep well at night as the spasms would keep me up. This turned into a vicious cycle as I was then too tired to handle my spasms well in the day. Now I find having regular Reflexology treatments enables me to have several good nights of sleep a week which does me the world of good as it means I can handle whatever my body throws at me in the day better. I also find burning scented candles or essential oils helps me relax (and after putting them out) get to sleep easier.

Everyone finds something different that will help them, for some people touching certain pressure points will relieve spasms to a certain extent, in others hot or cold therapy does. For me as I mentioned above heat, TENS and Reflexology are what keeps me ticking along in between Botox appointments. Its worth experimenting and trying to work out if anything particular helps you.

Comments on: "Alternative Coping Methods" (7)

  1. Hi great post :) I love alternative I can not move my legs due to nead and my muscle are in extreme pain, have you tried using essential oils in a carrier oil such as almond oil? Not only can you use it as many times as you like it has a very soothing feeling, I use almond oil as a carrier, then add 3 essential oils lavender, sweet orange and frankincense. It does not take the pain away but te soothing feeling is lovely plus the massaging is great for circulation, I know your in a wheelchair like I am so it may help :-)

  2. Lovely post. I will have a go at some of these. I’m due my next round of Botox next week and I’m getting pretty twisty and, as you know, this means pain. I’d rather try alternative approaches than just take a bag of pain killers that will probably have (undesirable) side effects. Thanks again. Best wishes, DG.

    • Anytime, I hope you find some of them affective! I personally find heat works best for me, as like you I don’t want to take lots of pain killers due to the side effects xx

  3. i love my TENS unit it is the only thing that seems to help that and my electric blanket:)

  4. Wow that’s so awesome to know that there are alternative coping ways to deal with Dystonia

  5. Corinne said:

    If it’s affordable acupuncture, acupressure and deep tissue massage is also provides amazing relief, even for a little bit of time. As we all know just a small amount of being pain free feels amazing.

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