A few days ago when I was feeling great I almost convinced myself that I may have put this syndrome into remission. I am enormously grateful that since last December I am having a few days break between major flare ups.
The last flare up made me realize that I have to focus on the original site of the flare up to relieve symptoms. My last one was caused by rotator cuff tendonitis in the left shoulder. However the pain and symptoms included the whole left side. Watching my good arm move in the mirror only brought about some relief. It wasn't till I realized I wasn't actually looking at my shoulder and I changed to looking specifically at the shoulder in the mirror, that in two days the pain was gone.
Now I have another problem. This one was caused by a headache. I have sleep apnoea and my CPAP mask broke so I went a night without. Sleep apnoea can cause you to wake in the early hours of the morning with a headache. This is what happen two days ago. Headaches trigger CRPS symptoms for me. You may remember from previous posts I take Vitamin B2 to prevent migraine. There is a Berlin double blind study that supports this. I take less than the dose used in the study and I take it as a multi B dose. This is a very effective preventative for migraine and works well most of the time for me. Google "migraine Vitamin B2" for the research. I use a CPAP machine so that I don't get the early morning headache. I do all in my power to prevent headache as it's a trigger for worsening CRPS for me.
Today the flare up caused by the headache involves the left side of my face. I can't tolerate hot or cold drinks and really want a hot cup of tea. My face and ear are hypersensitive and this extends down the back to the back of the left shoulder. I've had shooting, like stabbing with a needle, in my upper back on the left. I was so convinced that there was something there causing the shooting nerve pain that I kept rubbing my skin until now it's a bleeding mess. I should have realized it was just the aberrant nerve firing that goes with CRPS. Pressure eased it. I should have been wiser and just pressed down on the area instead of rubbing. The brain is a powerful thing and the message that something was wrong was very strong. My teeth are on edge and my gums are swollen and bleeding. I've cleaned and flossed my teeth several times as it feels like something must be causing the problem.
I know in my rational thinking mind that there is nothing wrong with my mouth. The swelling and bleeding and nerve firing are just symptoms created by my brain latching hold of the "there's somethings dreadfully wrong" message and causing symptoms like swelling and inflammation.
The tricky bit this time for me is that I cannot think how to use mirror therapy to relieve symptoms. So far I'm applying chili cream (capsaicin) because capsaicin breaks down substance p which is a neuro transmitter. This should reduce the painful messages. I'm applying heat packs and using a mouth wash in case of infection. I'm avoiding hot and cold drinks and eating on the good side. I'm massaging my face, head, ear and back. I'll be having a warm bath soon and put my face in the epson salts warm water. After I post this I'm distracting myself with enjoyable things and avoiding any stress. Most importantly I'm breathing out twice as long as in and doing this five times a day.
I will refer to my list for other things which might help. I know this will settle in time. At least now I know I can look forward to breaks between these flare ups. I'm having a difficult time today but I can see the bigger picture and know that I'm winning the battle. This is such a big difference to this time last year when I really felt I was going downhill fast, I was desperate and quite frightened. Finding mirror therapy and having a wholistic approach to helping myself has made that difference.
crps/rsd related articles
- Nursing Patients with CRPS/RSD
- Vitamin c and CRPS 2010
- Cleveland Clinic link - twin research
- Complex Regionaal Pain Syndrome and identical twins.
- Familial occurance of CRPS.
- Headache a risk factor for CRPS.
- Ehlers Danlos Syndrome and CRPS
- Brain change in chronic CRPS -Neuron
- Vitamin c as preventative for CRPS - Netherlands study 2007
- Vitamin C and CRPS study ARC Bristol
- BestBETs Best Evidence Topics - Hydrotherapy for Comples Regional Pain Syndrome (CRPS) of the foot and ankle
- Neurotopian - Matthias Weinberger's fantastic blog.
- hope-4crpsrsd - a Christian support group
- podcast - Australian Native Fruits bear sweet antioxidants.
- Explain Pain - David Butler's blog
- CRPS/RSD and Dentistry
- HTCwP - brain control of movement is altered in CRPS - study
- HTCwP - Self Compassion or Self Esteem
- Neuromatrix Training Blog
- Neurodynamics - Physical and Neural Health Blog
- Explain Pain Blog
- JB & JS report - Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?
- Matthais Weinberger's interview on "how to Cope with Pain" website.
- How to Cope with Pain - Ketamine Coma treatment for CRPS/RSD
- RSDHope - DVD set of three
- North Western University Feinburg School of Medicine "Old Memory Traces May trigger chronic pain."
- HOw to Cope with pain How Pain Affects Families -Tony's story.
- Prevention.com article -"Natural-Born Pain Killers"
- Brain control altered in movement with CRPS -How to Cope With Pain
- How to Cope With Pain - Asking for help.
- Hooshmand and Physical Therapy Part I
- Hooshmand and Physical Therapy Part II
- How to Cope with Pain on Recognize - Here's a way to get ready to move - with less pain.
- American Pain Foundation Booklet: Treatment Options - A Guide for People Living in Pain
- Preventing CRPS after surgery - International Research Foundation for RSD/CRPS
- How to Cope with Pain - great questions about Graded motor movements
- How to Cope with Pain - Recognize podcast
- How to Cope with Pain - Graded motor imagary
- How to Cope with Pain - Think & move & your pain will improve.
- How to Cope with Pain - CRPS - Can mirrors help?
- RSD Canada Online Survey Questionnaire
- For Grace web site
- For Grace Utube site
- How to Cope With Pain - Can mirrors help?
- Noi Group Australia
- Support groups help you cope with pain - HTCWP interview by National Pain Foundation
- How to Cope with Pain Mindfulness video from Utube.
- "How to Cope with Pain's" hilarious video.
- Jason's RSDS/CRPS News & Information blog
- BBC UK News - Vitamin C /crps study - "Mystery pain left me in a wheelchair"
- Dr Moseley's interview on How to Cope with Pain site.
- Virtual Reality as a Rehabilitative Technology for Phantom Limb Experience.
- UK mirror box therapy site.
- Ramachandran's mirror box video
- My interview on "How to Cope with Pain" website.
- Napp Pharmaceuticals donate mirror boxes - WebWire article
- How to Cope with Pain: A guide to coping with pain.
- Hooshmand and Physical Therapy Part II
Gadget by The Blog Doctor.http://www.blogdoctor.me/2009/01/random-rotating-post-gadget-with.html#ixzz0KYNw8qB2&D