Comment by shakna | Hacker News Reader

Comment by shakna | Hacker News Reader

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Getting a diagnosis when you don't have something easily understood can be an utterly soul destroying process.

I have fibromyalgia. Not as a label stuck to something that can't be understood, but firmly fitting to a disease that isn't yet fully understood. (Yay for me - I have every known symptom at one time or another.)

It took ten years, an enormous amount of pain, two neurologists, three GPs, a psychiatrist and a pain specialist before they were able to nail it down - and now they're able to help.

Unfortunately, there was a tendency to treat it as psychosomatic. Also unfortunately, treating it as psychosomatic promotes behaviours like "pushing through the pain" that are absolutely guaranteed to cause a flare up or major relapse in fibroymalgia.

This kind of story created fear for you. And it should, I'm sorry to say. For the most part, you will suffer alone and without understanding, and it's up to the sufferer to push their story along until they get an answer. I'd wish that process on nobody.

I feel you. I have RSD, a related disease, and even today half the doctors I see either dismiss it or do not believe in it. I went through YEARS of blame and denial before a very kind specialist in Europe spent time with me and gave me answers. By then it was too late to put it in remission, but their treatments did reduce it some, for which I am grateful as I'd not have lasted beyond that time without it. But day to day its still life altering. It's taken so much from me, that I cannot even afford to deal with it well anymore, let alone the other inevitable medical things and aging.

Pain is too often ignored, dismissed, miscategorized. While psychosomatic issues and stress positively make things worse, it's not always the root of all issues and too often it's projected as such. It will ultimately be the end of me as there is no realistic way to get enough back to survive long term.

> and now they're able to help.

what was the nail-down / how are they able to help now?

Diagnosis is a diagnosis of exclusion. Eventually with my set of symptoms it became clear that only two illnesses fit well enough. Fibromyalgia or multiple sclerosis. A clear MRI eliminated MS as an option.

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Treatment is a multi-pronged attack.

I have a drug cocktail aimed at desensitisation of the nervous system. It works well enough to take the edge off, but not during a flare up or relapse. It's the least important and least effective part of treatment.

I have a psychologist, aimed at pain management. The mental techniques around dealing with pain and stress on a daily basis. This becomes more important during a flare. It is also probably the most important part of treatment.

I have a physiotherapist. I need to maintain a certain level of physical activity or the illness can rapidly get worse, whilst at the same time, too much activity can also cause the same process.

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I should also point out that if I became completely resistant to treatment, a possibility for the future if things get worse, then my pain specialist is also involved in a series of trials using ketamine that usually results in desensitisation of the nervous system over the course of a couple weeks.

Point being, there is always hope for increasing quality of life, even if there is currently no hope of cure.

I know someone who also had suspected MS, and a clear MRI. Just to be sure, they also did a lumbar puncture. That actually confirmed the MS (presence of inflammation) despite the clear MRI.

Point being that a clear MRI does not totally eliminate MS.

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