Hi all - another new member here, and probably like most newbies I have SO many questions I don't even know where to start! I've been dithering about joining TZC for a few months, but after seeing another neurologist earlier this week, it feels like TZC is potentially my only hope at a "normal" life again. I suppose to a certain extent I'm lucky in that my hypermobility doesn't cause me major joint pain - other than excruciating headaches, that I am struggling to deal with. I've had migraines for the last 30 years (I just turned 50) but in the last 4-5 years the headaches have changed and somehow gotten even worse, to the point where nothing helps, no amount of painkillers, triptans, muscle relaxants etc - I've tried it all. The headaches became chronic (4-5 days/week) about a year ago, and in March this year I finally found a physio who made the connection between the headaches and my hypermobility and that the headaches are muscle related rather than purely the migraines I used to get. So earlier this week I saw a neurologist who basically said that I have chronic spasms in my traps (even though they are "softer" than they've been in years), and all I can do is carry on with physio and muscle relaxants. Which in my darker moments feels a bit like a life sentence as it means I'll never be rid of the pain, or the constant threat of pain hanging over me. I also don't think she had any understanding of the levels of pain that I am experiencing with the muscle involvement - it really is excruciating and not something I can live with chronically. Well, muscle relaxants don't help in the slightest, and while physio helps, I can't take my physio with me when I travel, or have her on standby every time I feel a headache coming on. I'm living a life at the moment where I am too scared to do most things in case it sets off another series of headaches. Up to a year ago I was fairly physically active, did all sorts of exercise (incl weights) and now it turns out I can't lift things above my head, I can't carry anything like shopping, or anything on my shoulders, like a backpack. I can't do any gardening or help decorate/paint the house or draw or even sit comfortably. Partly my issue is that I don't actually really know what sets off the headaches as I am physically capable of doing all these things and I get no warning signs that it is not good for me until the next day when I wake up in agony, and then I have to try and figure out what triggered it. So, for those of you who made it this far - I have a few questions: - Where do I start with the exercises on here - do I start with shoulders, neck, or something else? Any attempt to "force" change to my posture/shoulder position just sets of more headaches, so it has to be low and slow, as we all know (and patience is sadly NOT one of my strong points). At the moment I'm too scared to even do a gentle chin tuck, but I know I have to start somewhere. - My working theory at the moment is that my traps are tight, and while physio will help to release the tension, it will always come back due to something?? being weak that needs to be strengthened - I'm just not sure what or where to start? - Ultimately the muscles are tight for a reason and I can't figure out exactly why - and why now? I've had this body and my very curved spine and hypermobility for 50 years and nothing has changed recently over the last couple or years, other than aging? I know this has been a long ramble but I really hope someone can give me some pointers on what worked for them - or where I should start? I'm really quite despondent to be honest as I just want to get better and be able to live my life again, and I'm really hoping TZC could be the answer!

Posted by elsa1000 at 2023-09-10 13:50:59 UTC