I have been suffering from chronic pain since 10 years now. My right shoulder, arm and hand are affected from a condition called Complex Regional Pain Syndrome or CRPS in short. I also suffer from a kind of cluster headache condition with this very poetical name: paroxysmal hemicrania continua. Despite all this problems I look normal, there is no way to see that I am sick. I often hear “you are looking great today”. Pain can only be seen on my face but mainly from people close to me.
To be short these health conditions give me moderate to severe (more severe than moderate) pain in my shoulder, arm and hand that can be described like being stabbed and electrocuted all day and night in those areas. My headaches appear at night and feel like being grabbed by the base of my skull by a clamp and stabbed straight through my head, constantly or in clusters of a minute or two, day and night for up to 6-8 weeks.
There is almost nothing that can be done to cure or stop the pain as for now. Researches are being done all over the world but the authorities, most neurologists and general practitioners are so conservative that the patients are left in distress everywhere. I will not talk about fundings and the dire situation in the public health system all over the world leaving chronic pain sufferers on the side because it is non lethal, too long and too expensive to treat!
These conditions that cause chronic pain make people loose everything: mobility, freedom, sleep, jobs and career, friends, husbands or wives, confidence, memory, creativity, moral as far as their lives. I personally considered this disease, when it stoke me at 31, as a small death. I had to go through all the stages of grief to reach acceptance of my new self. Without help and with my mind all fuzzed up by the medication!
Then, I had to deal with people preconceived ideas on pain. It goes like this: “did you try this or this ?”, “take a painkiller”, “I had a tooth hache last year, it was sooo painful, I went to this dentist and he made everything better”, “I know someone who had a bad back and went to see this doctor and he/she made him/her better in no time”, etc, etc. This hurts, so far, there is nothing that works for us.
There are sometimes, close ones who will not accept your condition and think that tomorrow you will be cured like that, with a pill. In that situation you cannot even hope to talk about your condition to try to make them understand what it is, how it affects you, how you feel and that you need their help. It makes you feel rejected.
There is also, the difficult journey through the modern medical system who does not have time to listen to the patients anymore. It took me 6 years to find out what really was wrong we me! In that time I was examined by neurologists, circulatory specialists, physiotherapists, anaesthetists, radiologists, pain specialists and no one took the time to tell me what was wrong with me! I have chronic pain that’s all.
Finally lets talk a little bit about the state help. Social welfare is doing everything they can to make sure that you are left in dire straits. No help, you are left alone even if you have paid your taxes for years! They do not care. They do not try to understand what is your condition. They make you feel nothing more than a crook that wants to abuse the system. I experienced it first hand. Then, you have the position of governments on researches and access to some medication that are either too expensive or politically too controversial despite the fact that they allow sufferers to resume a quasi-normal life and leave the social welfare system to be independent again! Worldwide, chronic pain costs as much as cancer, HIV and diabetes costs put together. Last year in the US, chronic pain cost more that the cost of all the war the US is involved in!
No changes are made or way too slowly. I have to say that goes beyond my understanding!