How much pain?

Pain is highly subjective and a complex sensation and phenomenon. There are many scales and questionnaires that attempt to objectively quantify pain. A well-known pain scale is the McGill Pain Index.



If you see this chart, you will see that the pain of complex regional pain syndrome (CRPS) is the worst sort of pain one can undergo. Some people with JHS/H-EDS may have fibromyalgia pain, CRPS, and other complex neuropathic pain that reach right to the top of the scale. 

Whether or not the pain appears proportionate to the inciting cause, what ultimately matters to the well being of the person is their perception of the pain they are feeling. The pain may be highly disproportionate in CRPS, neuropathic pain, and many such conditions. An excellent document on the pain (types, mechanisms and management options) in EDS is here

Apart from the pain one perceives, it matters how they are able to deal with it and function in spite of it. This may be influenced by the presence of other/multiple illnesses, depression, social and emotional support, personal attitudes and background, and presence of other factors like fatigue, etc. A scale that measures the functioning of a person affected by pain, used by the American Chronic Pain Association is this. 



If you have been living with chronic pain for a number of years, you will have your own pain scale and pain milestone record, even if mental. I remember many events of the world and my life and the year it was, in the context of the pain level or health event around that time. And since I am asked how are you frequently by friends and family, I often wonder if I should share a somewhat standardized scale with them that would be more truthful than "I am well" and "I have a bit of pain, but I will be fine soon". 

In my own pain scale, the worst pain I have faced in my life recently was related to my lower back and pelvic area - which was at its peak (10/10) for a period of two years after childbirth. But I had faced equally bad pain twice more in life. Once during the period when I had to continue travelling for a week (and even carry baggage) when two of my intervertebral discs had prolapsed the first day in the train (period of 10/10 pain was 10 days). Second was the period when there was an intense flare up involving prolapsed discs, pinched nerves, displaced vertebra, severe neuropathic pain and spasms in my lower limbs, torn muscle in upper back - all at the same time (period of 10/10 pain was 3-4 months). 


Another scale frequently posted by people with EDS, fibromyalgia and chronic illnesses is this, which I think is simple, humorous and quite accurate. 

A very comprehensive post on pain management (in the context of CRPS but applicable to pain in H-EDS as well) is here
http://princessinthetower.org/how-to-manage-and-treat-complex-regional-pain-syndrome/