Published on 12, July, 2020
Hi,
I am a young woman who has an identical twin sister. We were both diagnosed with autism this year. But, we have suspected we were autistic for about two years. But, that's not what I want to discuss in this post. Last year my sister fell down several stairs landing on her bum on each step. Since then she has suffered with pain in her tailbone/coccyx. Two months after this occurred she began to suffer from pelvic pain and foot pain as well as persistent sexual arousal. Needless to say this has caused her a lot of distress, anxiety, and has all made her depression much worse. Over the last 7 months, I have taken my sister to many, many appointments. But, she still hasn't really gotten any help. And, in the meantime her symptoms have gotten worse and she is now suffering from pain in her abdomen, lower back, sciatic nerve pain, leg pain, tight/tense muscles, severe neck pain (which was not taken seriously by her GP for three months and then it turned out she has a protruding disc in her neck that is causing mild spinal compression and compressing other nerves. And, I think part of the reason she wasn't taken seriously is because she is autistic and does not express how much pain she is in or how distressed she is), and now burning mouth syndrome as well. I feel like if she had been helped months ago she would not have deteriorated into the condition she is in now. Furthermore, I think she would not have developed burning mouth syndrome (if that's even what she has, I don't actually know because no one will do any tests to see if it has any other causes like vitamin or mineral deficiencies). But, as of right now, her GP is saying he can't do anything for her. He told her she needed to see pain management who would be able to do more tests/investigations to find out what is wrong with her. But, after waiting a few months for an appointment with pain management, she discovered that she had been referred to Connect Health which is a company the NHS hires to provide services (mainly physiotherapy) to patients. The Connect Health pain management is a "holistic" service that doesn't offer any holistic services. What I mean by this is they don't prescribe pain killers, they don't do nerve block injections, and they don't do investigations/tests. Instead they tell you to do yoga, practice mindfulness, do meditation, and etc. But, you are expected to figure out how to do all of this on your own. Needless to say my sister was very disappointed in the appointment. Actually she was sobbing after it. And, honestly, I don't know what to do anymore. I am taking care of her, as my mother works and also can't really be bothered to take care of her, and my father died three years ago from cancer.
I feel like my sister and I have gone through too much. We lost our dad, who we loved so much and who loved us unconditionally. Then our mom decided she wanted to move back to the UK, but my sister and I were born and raised in the USA. We don't feel like we can live on our own right now, and so we had to move with her. So we lost our home, many of our belongings, our pets, and our jobs. Now my sister is suffering with poor physical health and I just don't know what to do.
My sister is in a terrible state. She is constantly distracted by her physical discomfort. I mean, she's autistic and she suffered from pretty severe sensory issues as a child, which were mostly resolved by occupational therapy. So being uncomfortable is an absolute nightmare for her. And, she tells me every few days that she wants to die.
Needless to say, what was left of my mental health has pretty much been destroyed at this point. I just want my sister to get the help she needs.
I know it's a long shot, but does anyone have any advice?
First off you are a wonderful, loving sister
•Have you tried to go to a chiropractor or an Osteopath?•
I had similar problems with bones that went wrong from an accident and the only real help I eventually got was with a chiropractor who did an x-ray right off, without my having to explain myself at all. He pin pointed various problems and began a plan of recovery.
It is great thing about chiropractic: Its not a chatty affair. They feel, they look, they move things this way and that and start adjusting. If there is damage they can pin point it and show it and that is documented proof that can then be brought to a GP who cannot ignore it.
GPs are for referrals to specialists - once you've got a relationship with a specialist things get better and you don't need the GP any more. Specialists and Surgeons are better as they are often ND themselves.
Best of all, is I didn't feel like I was sitting in the hot seat having to prove my case to a doubter, nor stammer through a litany with a GP who has little experience or interest in understanding ND peeps. They tend to gaslight, dismiss and even infantilize. or give these looks that say they are already judging me without really hearing what I say.
I wish we could just go directly to a specialist and bypass the GP charade.
I have not tried an osteopath or chiropractor. I have taken her to see a private pelvic pain physiotherapist, which did help a bit, but was very expensive and far away. And, the pelvic pain physiotherapist did write a my sister a letter to give to her GP, which is the only reason they found the protruding disc in her neck. Without the letter I think they would have continued to not take her seriously about it.
As for being referred to a specialist, that is what my sister was told was happening when she was referred to pain management. But, as I said in my original post, she was referred to a "holistic" service which evidently her GP didn't know anything about because he told her they would do more investigations and etc.
I will look into osteopaths and maybe chiropractors but I'm not sure it will help her. I think she is having problems with her nerves, not her bones. But, thank you for the suggestion and advice. I appreciate it.