Status
Not open for further replies.

SireWakko

New member
Joined
Jul 12, 2018
Messages
1
Reason
DX FIBRO
Diagnosis
06/2017
Country
US
State
MO
So I have a kidney transplant and about 40% efficient there and was diagnosed with Fibromyalgia last year. I have not been able to hold permanent full time employment due to chronic fatigue, muscle weakness, and pain/neuropathy. My last two employers said they would work with me on the tardiness and my bad days. I was fired for being chronically tardy. I have been fighting for medicaide and Social Security for 2 years and keep getting denied. Final hearing is in Sept now. How does everyone manage? I have temporary support from family but that is very short term not to mention that because I am only able to take half my medication I have had a rejection this past January and I am now labeled as non-compliant which is hurting my case even more. Curious to see how everyone manages.
 
So sorry that you are feeling hopeless. I know the feeling all to well. It is hard to live with constant pain and fatigue. Who wouldn’t be depressed and anxious? I have lost a lot of friends who say the wrong things and do not understand or offer support. Oh well, I wouldn’t call them friends.

I used to be a social butterfly and now I rarely leave my home. Sometimes even showering for the day in a major task. I miss a lot of family functions and parties. Since I am in the same boat as you I am going to wait for other responses.

Hang in there. ❤️
 
Just Hang in there. I know it's hard to do but there's really nothing else you can do and worrying about it just makes things worse. I still worry too but I realized that if I didn't try to reduce the worrying that it would kill me. I know the financial stress you are dealing with too. I went from being a hard worker, military and lots of hobbies, house, vehicles, toys, lots of family and friends, etc to Not being able to work, no friends and family, sold vehicles and toys and lots of belongings, rent out the house. I have been waiting for 6 years for disability to come through been denied many times waiting for hearing.

All I can say is you have to accept that your life is going to change and there's a good chance it won't ever go back but you will eventually find new balance and life won't seem as bad as it does now. Might not be what you want to hear but just try to occupy your mind with something else and things will get better. Don't give up and don't lose hope. The best thing you can do is figure out how to reduce stress.
 
I had to go to the ER today, which is something I never do. My entire body was screaming in pain and spasming for past 2 weeks. I was diagnosed 3 years ago. The physicians at clinics do nothing. Finally a real Dr listened and prescribed a narcotic because I couldn’t function. I was referred to a pain clinic last week but unable to go until August 23. What are we as patients supposed to do? I am disappointed in the way patients with chronic pain are treated. Each day is a crap shoot. Never knowing what’s going to happen. I have been on 800 mg of Gabapentin 3 times daily, tried tramadol, didn’t work, go to a chiropractor, even use CBD balm. It’s all an experiment and it is rough
 
Last edited:
Sorry you’re feeling hopeless, it’s a fairly regular occurrence with fibro ☹️ It messes with your emotions every day and you never know how you’re going to be feeling from one minute to the next. I’ve been up and down so many times I’ve lost count so you are definitely not alone. I had to trail round shops at the weekend picking up school uniform for my girls & when I came home I was exhausted and in so much pain I couldn’t stop the tears from coming. I feel like a failure as a mum sometimes but I know it’s a big part of this horrible illness. Today I’m feeling more positive because I’m having a better day. I can’t advise on claiming benefits because I’m not quite at that stage yet but I know that day will come sometime. It makes me so frustrated and angry about what little help there seems to be out there for us who have worked hard all our days but now genuinely need it. I wish you all the luck in the world with claiming Social Security. I hope it all works itself out soon but in the meantime if you need any advice or just to vent, there are some great people on here who always help to pick you up again.
 
Status
Not open for further replies.
Back
Top