After a bit more research I just want to share my learning in case any of you want to revisit something that you may like to try after more information. I wont re type the whole aspirin post from mads and me , so please have a look. These are some things I have cherry picked formyself and why-
Vascular shunting hypothesis- best we can do is maintain capillary health:
Aspirin , thins blood so it reaches capillary more easily and thereby keeps blood going to nourish surrounding tissue. Aspirin modulates nitric oxide, which helps maintain homeostasis of blood vessels allowing them to function smoothly.
Magnesium is a mild vasodilator that allows more blood to reach tissues, for me circulatory drugs cause an over reaction in this mechanism and I can not tolerate.
Vit c reduces fragility of capillary wall.
Why I want vascular perfusion - simply to prevent small fibre nerve damage and avoid tissue necrosis ie sores or ulcers. Keeping capillary health will allow other medications to work better.
Exercise -vital in keeping blood to tissues, I can guarantee that were any of us in hospital or in patient at a pain clinic there would be no sitting still. Not even patients in a coma lie still- passive movements are done regularly ,hip replacement - stand the next day. You bet there is some pain but dont avoid it all , know what you can do without a flare and keep doing it, doesnt matter if you get it wrong sometimes . Wriggle toes ,pump calves whatever.
If you dont get blood to tissues they DIE - that simple.
Hyperexcitability of neurone hypothesis - well we await new SCB with excitement(see what I did there) Currently to dull nerves from firing we only have drugs that exert their influence principally on the central nervous system and some a bit (anticonvulsants ) locally at the nerve to block its firing at the sodium channel gate- which in Em goes crazy firing off and causes bombardment of pain signals.
In the absence of specific SCB we have Antidepressants and Anticonvulsants.
Because the act mainly on the central nervous system they may be hard to tolerate. consider though they are principally to stop convulsions and depression they need to act on the brain. While mechanism of EM is not fully understood it seems that the peripheral nerves ie in hands and feet are more involved. We gain relief from these drugs by dulling of nerve impulses.
As mentioned in other post these antidepressants also work to keep seratonin , norpinepherine and dopamine circulating in the brain . This helps decrease the experience of pain .
They ARE difficult to start as they do affect the CNS/ brain - you may feel dizzy sick have blurred vision BUT most side effects settle . Some are serious so check with your doctor - most are just horrid temporarily.
These drugs are hard to trial because of side effects but they are not all the same. Cymbalta gave me mouth ulcers and increased flares BUT Effexor made me sick and dizzy for two weeks then a 35% improvement in my EM symptoms. It is a balance of what side effects are tolerable and safe. The benefits may take up to a month if you are increasing the dose slowly- if one does not work you may wish to try another. Yep - hard to trial.
Touch and massage - here it is again but if you do not touch and move effected parts and get some normal impulses through the tissues it is likely that all sensation will be felt as pain. This is not a necessary consequence of Em or neuropathy. Pain and deep touch messages run in completely different pathways to the brain - yes think of an epidural where the patient can feel doctors working but no pain> Working on touch ,hypersensitivity can be much reduced.
Transdermal creams with Lidocaine, Ketamine etc can help desensitise skin. They are expensive and need to be made by a compounding pharmacist. A doctors prescription is required. The cream is used 5 times a day for 2weeks before you see results. Consider short term use to help desensitise if long term use is too expensive or too much of a pest,.