I wrote a post last night, published it and then pulled it down. It was far too much to see all of those words, all of my feelings written down for everyone to see.
I have put years of effort in to trying to manage my pain and all of the strange things that my body does without any help.
The physio in the pain management team feels that my pain stems from a lack of physical activity, they ignored or did not care about the fact that I was at one time going to the gym 4 times a week and was extremely fit and yet still in pain from my pelvis,
They ignored the fact that the pain in my hands, wrists, ankles, fingers, feet, elbows and shoulders began 3 years into my pain journey and that up until this time I had taken no pain medication, preferring to try to manage it on my own.
Having to go and ask a doctor for drugs for pain was the most humiliating thing I have ever faced, but the relief I felt at being able to move around again in minimal pain? It was life changing.
They ignored the fact that when my arthritis meds started working I took myself off of pain medication and went 3 months with nothing, managing that lesser degree of pain with other methods.
Having to go to the gp again for pain relief, when my arthritis symptoms returned felt like such a failure on my part.
They implied that “young women like me become readily addicted to the feelings they get from pain medication”, despite the fact that I have told them I do not get pleasurable feelings from my pain medication and had no trouble weaning myself off of them when I no longer felt I needed them. I have only been taking pain relief again for a week and at a much lower dose than I previously was having. They ignored the fact that I consider each dose of pain medication I take and try first to minimise my pain through other means.
They suggested that my Rheumatologist (who is well known and respected in her field) has prescribed these very serious arthritis medications without actually proving (to their satisfaction) that there is anything wrong with me. They made it clear that they don’t believe that my joint inflammation, which is often visible and always detectable on examination of my joints, is real.
They are insisting that I have an entirely new battery of tests, some of which are very invasive and (from what I understand) unpleasant in order to prove that I have a real rheumatic condition.
They took my husband’s mention of my easy bruising as a sign that my arthritis drugs may be harming me and are therefore unnecessary despite the fact that I told them I have always bruised very readily.
They want me to take anti-depressants, beginning immediately, but repeatedly lectured me about the dangers of all of the medications I am taking.
I was too intimidated to tell them that I would prefer not to try anti-depressants until I have tried the various approaches that the psychologist recommended to manage my pain/depression, I wimped out.
I feel as though I have been labelled a hypochondriac and a drug-addict with no real medical problems.
The day that I first saw my Rheumatologist and she examined me and noted that there was indeed significant joint inflammation, despite the fact that my blood tests were not typical of a patient with this type of inflammation (and proceeded to treat me accordingly) gave me the most relief and hope that I had had in years.
I now feel that I should stop taking my pain relief, these pain doctors clearly feel I am not entitled to it. If it is all in my mind or because I am too lazy then I guess I am not.
If all of that help is taken away and I have to go on suffering, left to my own devices, I don’t know how I will go on.
I am at my lowest of lows.