If this is inappropriate please remove it and I apologise. It is not a cry for help. I am in desperate need of advice.
(Regarding ES, I recently had a CT and styloids were “30mm each, of normal length”. They didn’t report on the angle. So this may not be exactly about ES, but it is about an undiagnosed pain disorder that shares many of the symptoms.)
So 2 years I’ve been fighting this and every day is worse than the one before. I have reached breaking point and in the past few weeks have had some pretty rough pills to swallow. One is that I know that I can’t live with whatever is wrong with me. I just can’t. I’m 25 and every morning I wake into a nightmare. I can’t function beyond basic survival, I can’t take enjoyment in anything, my moment-to-moment existence is just engulfed in pain. I may as well be a vegetable because I will never be able to get a job or contribute anything of value. I’m not being defeatist - these are just facts I’ve tried to disprove, unsuccessfully, for a long time and have finally come to accept. My future, if I choose to keep going without an effective treatment, would be complete and unremitting misery. I’ve thought long and hard about it and I’m not prepared to go through that.
The other is that I have lost almost all hope that I can be diagnosed, let alone cured. Maybe I’m just one of those unfortunate people who have something so obscure that it can never be detected or treated effectively. I have run the gauntlet of doctors from neurologists to dentists to ENTs to pain specialists and none of them have been able to offer even the slightest clue as to what is going on.
But the other part of me, the quickly fading hopeful part, thinks that the only reason I haven’t found help is because none of the doctors I’ve seen have really made an effort to help me. I am not the typical patient who goes to the doctor and complains of ‘vague pain’ and it’s then up to the doctor to tease the relevant information out of them; I understand my pain intimately and have spent gruelling hours and days testing exactly how it works and how it can be aggravated. I think a lot of members here are probably the same. I know exactly where the primary sites of pain are and how to reliably activate them. You would think being so in tune with my condition would help doctors to bypass their usual circlings and get straight to the suspected root of the problem.
But no… every doctor I see is the same. Well, they’re not really sure what’s going on but, uh, they can give me some pills and see if that helps. Send me for an MRI. Same old, same old. Oh, the MRI came back clear. The pills aren’t working? Well, uh, we can try these other pills instead…
Now I know that these practices are useful and probably in the majority of cases are all that is needed. But my case is not the majority, I KNOW there is some structural problem that hasn’t been detected yet, and nobody is taking me seriously enough to crack their knuckles and start giving it the attention it needs if it is to ever be solved.
I’m not asking for a miracle doctor who will know what’s wrong with me in the first five minutes. All I want is a doctor who says “Ok, let’s figure this out”. I have never met such a doctor. They will allocate their 15 minutes to me and then send me out the door and cast me from their minds. I am passed around like chewed meat.
I am frustrated because I read other accounts and papers of patients with difficult to diagnose conditions and their doctors really go the extra mile for them. Scans, nerve conduction tests, diagnostic injections, just working through a list of potential problems until they hit the bullseye. Why am I so quickly lumped in the pills, pills, pills basket?
I wonder if this may be because I am not adequately getting across how severe and debilitating my pain is. I have told them in no unclear terms that it has ruined my life, that I have lost my place at uni and am withering away in bed every day, but that hasn’t had much of an impact. Maybe if I were to tell them that I am making serious preparations to end my life, they would sit up and take notice. Or - and this is my worry - they would commit me to a psych ward as an involuntary risk-to-self.
So basically I need to know how to get doctors to take me seriously. I know finding a good one can be a long road, but I am nearly broke and am not willing to become a chronic patient who spends their life looking for something that never comes.
Sorry for the depressing tone, and thanks in advance.