Feeling such despair
 

I'm at a loss for words ...my muscles continue to atrophy full body. When I sleep there is little blood going into my hands and its so painful ,,the rsd has spread to my left hand and its curling up. The originally rsd pain in. Foot has intensified a lot...how much more can or do I want to take. There is no way out of this nightmare! Thanks for letting me vent...oh I lost my job too...

Oh Deb! I am SO sorry! :hug:

Debbie I'm SO sorry you're in such pain!!I'm sorry about your job too. I know this time of year is horrible to los an income.....please keep faith. Know there are people out there who care! Who understand, at least a little, how horrible this pain can be!! Iam very blessed that my employer is VERY understanding when it omes to illness. If I worked anywhere else I would've been fired a long time ago. I hope you find SOME sort of relief! You'll be in my prayers

When it rains it pours.....Huh, Debbie ?

I'm sorry it's pouring there.

May I ask if you lost your job from a 'job' related issue, like a layoff, or whether your health has made it so that you can't still do the job ? If you want to talk about it.....

Have you talked to your docs about the changes that are happening ? Have you had some degree of control of your pain prior to this ?

Hi
 

I lost my job because I could no longer do it due to muscle dystrophy ...I don't feel I have ever had any control over this disease and all the docs I see just don't unknown what to do with me...
Thanks for listening.....


Deb

Occupational therapy really helped with my hand/fingers curling in. They still bend in somewhat, but not as bad.

Sorry to hear that Deb.

Regarding the job.....unfortunately, this time comes during the course of many chronic conditions as physical symptoms increase and partial to total disability becomes our reality. You can only manage working as long as you can manage your symptoms.......some of that is due to your own mental determination, but most is due to the course of the condition and the medical management. A lot about the course of your condition IS out of your control. That stinks......for all of us. All you can do is try to manage the parts that you DO have some control over as best you can. That means keeping yourself motivated to accomplish what you can.......and make sure you are maximizing your potential by having a medical team also committed to helping you manage your symptoms so you can be as functional as possible.

So........regarding your medical team........I think you can see where this is going.......I think you need to make some changes ! I know that's not always easy to do. Quite frankly, I've been procrastinating on making some changes with my own team. When my body feels like crapola, I don't feel like dealing with those issues. When my body actually feels decent, I want to do something that involves enjoying life.......not making phone calls to find a new PCP, having to travel further away for each appt, having to go through my whole medical history, trying to not look like I am switching doctors frequently when, infact, I am.....the list goes on. I understand not wanting to make the efforts to find a better medical team (which would help in the long run) when in the short term it means more stress on you, more effort from you, and possibly more disappointment. Still.....it should be done if you don't feel like your team understands you and is trying to help.

I'm so sorry to hear of your continued health problems not to mention loss of
your job. I wish there was something I could say or do to ease your pain. Please
know our hearts are with you. :hug:

Deb, please know we all care for you and what you are dealing with. Please don't give up-this is a set back and I know feels terrible. Losing your job is horrible, but please view it as temporary. I know when my rsd spread, it was really harad to deal with. When it went to my hand and lost complete use of my hand was hard. The physical therapy group had me do daily therapy at home. Took several plastic containers and put different things in each one. Cotton balls in one, rice in another, coffee grounds in another, dried beans in another, sugar in another, just different textures, etc. put your hand in the container and just work your fingers thru the different textures. my hand and fingers went thru from being straight flat with no finger movement to being able to partially bend the fingers. Now able to partially bend fingers and cut food, and have functual use of hand unlike before therapy with no use of hand.
Please know we all care about you and what you are going thru. We know it's tough! You are not alone and we care. Can you get unemployment? Hopefully you can get some assistance. It's scary isn't it. I have full body rsd, and it's so hard. Unless someone has it, it's difficult for others to understand what we go thru. Don't give up- thank you for sharing your despair. we truly understand. One day at a time-right! Take care, and please share your thoughts with us. your friend, loretta

OH I am so sorry! I wish where was something that I could say or do! Have you been in touch with doctors on the spreading???? I am so sorry you're in that amount of pain! :hug: