depressed

[tryingtosurvive1]

I have serious muscle wasting in my feet because of my hereditary neuromuscular condition, CMT. It's gotten a lot worse this year. I'm worried that it's going to happen in my hands too. I also have chronic pain and numbness.
I fear disability and premature aging and keep thinking about suicide.
I'm going to the dr for my condition next week.

I've been suicidal for a year now and it's just so exhausting and never goes away, despite therapy and medication.

[Cakelady]

This must be so distressing for you, I am so sorry you feel so bad:( I hope you get on ok at the doctors this week, take care xx

[ServerError]

It's so easy to tell someone with a straightforward anxiety disorder that they need medication and therapy. But in a situation like this, I'm all out of advice. I can't even begin to imagine how hard it must be.

All I can say - and it feels horribly inadequate - is to make sure you get plenty of support. Never be afraid to reach out to people, be it friends, doctors, family, charities, and, if you look in the right places, the internet. Is there an online CMT community that could offer any help?

[snowghost57]

Please don't commit suicide, think of your family and everyone that loves you. If the medication isn't working tell your doctor. If you have been this way for a year, its time to try a new approach. Are there any CMT support groups in your area? There is a lot of support online as well. Stay diligent and reach out to people. Have you checked Facebook and see if there are any groups? I don't know much about CMT, however, after quick look online, it is manageable. You have to make that choice to focus on finding treatments and not waste time on dwelling on ending your life. Please take care of yourself. Hugs!

[Ihavelostmymarbles]

You were very nice to me on anxiety zone when I was freaking out about my issues. I don't have the same thing that you have, but I can say that I know what it's like to be so down and just feel like you can't go on anymore. Please don't lose hope and be kind to yourself. It's so hard when you're in a fight with your own body, but things are going to be okay no matter what. Keep fighting! <3

[Bigboyuk]

Hi This isn't the way forward honest I have been there my self 2 months ago It's not a place I ever want to be again. For a whole year how have you managed to get through this 12 months?? All I can say if your meds aren't working and your therapy isn't working then please got back to your dr and tell him/her what is going on Seriously there is a light on at the end of this dark tunnel that I do know :) :hugs: Cheers

[tryingtosurvive1]

Thanks everyone.
I hit a serious low point last night but am doing a bit better today.
Re: suggestions. I do belong to a facebook CMT group that is helpful for finding doctors and discussing treatment. Most people there are normal psychologically though, so they don't necessarily understand the sheer terror of the chronically anxious.
Many of my fears about the future, so I'm hoping I can arrange to speak with a social worker when I go to the clinic for CMT. Maybe if I know how to apply for disability, etc, I will feel less scared. Right now I'm working full time but naturally I fear the worst.

I think the problem is that I have a pre-existing anxiety disorder with OCD and isolating/agoraphobic tendencies, so concerns about mobility are just making me 1000x worse. I might check out the agoraphobia board. I get out for work but have trouble doing much else, and my therapist's move to another part of the city was really scary for me!

I haven't written much here because I don't want to upset people, plus discussing the clinical presentation of symptoms might just confuse people with ALS fears. ALS is a very distinct clinical entity that moves fast and doesn't involve sensory nerves at all. I also don't want people to think they have CMT. It's pretty clear if you have it: you'll have multiple generations of people with very high arches and the kind of muscle weakness that pops out in gym class. We CMT-ers tend to compensate for a very long time, and families normalize weird things--otherwise everyone would be diagnosed.

Honestly the thing that calms me down most is telling people who are in their 20s and 30s and twitching all over that they don't have a neuromuscular condition. I very much believe Scottt, etc, all are okay physically and that BFS is a real psychosomatic manifestation of anxiety. I think more people get it than is generally realized. Like Josh1234 I now know more about neuromuscular problems than most doctors. But I'm sorry people are so terrified.

I may check in again here. People on this board understand OCD and health terror the way few others do.

[snowghost57]

Please keep us posted. I admit, I don't know much about health anxiety, I do understand anxiety. I am confident that you will find another therapist. The best tool is knowledge and I'm not talking about dr google. We can take charge of our lives. We just can't succumb to the stinkin thinkin our brains want to do. We fear the future and the only thing we can deal with is the NOW. It's all we have. Reach out for support, knowledge is power, it will make you feel stronger and more confident. I live in the states as well, if you need information in regards to disability I can send you some information, just send me a PM.