Hopefully, writing will help me see things clearer. This is mainly for me, but if it applies to anyone else, then I am glad I can help them know they are not alone. I own an insurance agency with my son. Three years ago, the pain became constant and I could no longer go out for meetings unless I had a day of rest before and a day of rest after (I sleep 12 hours at a time when I do sleep). Not sure anyone else sleeps that long - my doctor says it is not healthy but apparently my body needs it. I feel like the tin man. I am working part time from home now so I can lie down when I need to. I try to go to one lunch a month with a client. Realistically I am not really doing more than 1-2 hours a day of work. Everything hurts ... sharp pains in feet, swollen hands/tremors, gets very hard to type, hard to walk, both needs are in pain, back is gone completely and I fall a lot. My dilemma is I am 52 years old, and I think I am too young to give up and go on disability or apply. But I cannot handle the pain much longer. I need to rest more and have less stress. My son (the one in business with me) does not want to admit I am sick at all. You know, I believe boys have a hard time dealing with a sick mother ... they seem to refuse to accept the fact that she is not the same strong parent that raised them. I have four boys. Three are mine and one step-son. My step-son is the only one with any empathy; he's the baby in the family (20 years old). My other two play professional basketball so I don't see them often. I believe I would have already applied for disability if I was not so driven to help my son succeed. But that time is coming to a close and he is going to have to learn to do it on his own now. I think the worst part is I feel so alone. my husband is wonderful; could not ask for a more caring, loving man. I am blessed to have him. Are any of you on disability? Have you reached the same point as I am at right now? It pains me to see my friends go out to dinner at night, dancing, traveling, etc. I physically hurt thinking about doing those things. I have decided to get a wheelchair scooter so I can walk my dogs again. my spine is unstable and I cannot walk more than 10 minutes without severe pain in my lower back shooting down my legs. And I cannot sit more than a few minutes without my neck, shoulders and head starting to hurt. I know my pride has stopped me from getting a scooter chair to this point, but I am tired of grabbing walls so I don't fall. I have a Rollator but after a while it hurts my hands that are already swollen because I have to put my weight on it so I don't fall. I cannot drive anymore because I cannot turn my head all the way around at times and it scares me to risk someone else's life because I am prideful and continue to do something that is not safe. I also have severe panic attacks .. have for many years ... does anyone else have these? these by themselves keep me from driving, too. I am going back to the orthpaedic and seeing the rheumy again ... my eyes are getting worse so I have to see the eye doctor, as well. I do believe Sjogren's may be the cause. I cannot wear contacts because they immediately stick to my eyes . this happened two years ago and I did not put two and two together. I don't know. just so very tired. longing for a stress free life and hoping to find the right combination of food, vitamins and ???? I keep getting infections on the MTX and have to go off of it. He wants to start me on Humira but I am afraid of the same thing. I have been off meds three weeks now and infections are still there. I do believe I need to file for disability. in florida, it takes up to six months to get approved. I will write again soon and update myself, hopefully with a much happier outlook.
Wow, you have every symptom I have but it seems that yours are magnified. You have a whole website of people feeling the same way. You will get a lot of support here! I am praying for all of you because I literally feel your pain. God Bless You and I hope everyone has a great weekend! We should all try to get together once a year with our families. (somewhere in a centrally located place) After all, we are about the only ones who know what each other are going through.
dittoing in here!! I am also 52 and have all the same symptoms as you...I fought the disability route too..until almost 2 years ago now when hubby said 'so you going to kill yourself working or stop and enjoy what is left of it?'
Dear Smitty & TEHawk:
I cannot believe you read what I wrote! Thank you so much for the support. My husband is saying the same thing, Smitty! I am just fighting it, as you both know, I guess. You have no idea how nice it is to hear I am not alone. And I would love to meet in a central location some time with people that actually understand. You both will be in my prayers, as well. So you did decide to file for disability, Smitty? If so, do you regret it? I just think I have gone as long as I can now.
Oh, I'm sorry you're having such a rough time. Applying for disability may not be the worst idea.
Of course we read these things! LOL I can certainly relate to lot of what you said – I suspect almost everyone here can. Tired. Yup. At the moment I’m down for the count for at least 10 hours a night. On Enbrel, that’s between 7 and 8, but I’m on an Enbrel pause while a small infection on my toe clears up. Enbrel has done all kinds of good things for me: my depression and feelings of panic are better, my appetite more normal, and my energy level much improved. That’s on top of the reduction of pain and stiffness. It’s not a complete miracle, but if I were still employed (I’m retired), I’d certainly be able to manage with the help of the biologic.
Tootles, I think you need to try Humira before you decide to go on disability. What’s the worst that can happen?
Thank you, Seenie! I am such a chicken to try the Humira... If MTX causes all these infections, what will a Biologic do? Starting week 4 without the MTX - the staph infection turned into a strep infection ????? in same place on my abdomen .. didn't even know that could happen; now I know more about Strep than I want to lol .. Just know I would not have gotten either of these if not on the MTX - LOL .. I had to have an emergency hysterectomy last year due to so much growth in and around that area ... doc did not know what it was ... it was excessive endometrial growth (and I had just had endometrial ablation surgery to remove it all two years prior); day after surgery I was sitting in bed cross legged and she could not believe it ... my first follow up, all stitches were healed. She said my immune system was in complete overdrive. So, in some ways, I have come to depend on my system to protect me from the creepy crawlies, but it is certainly a give and take with this monster. Have to try limiting my diet even more before Humira, I think, for now. Just have to try it ... then I will give in. I am not giving up, though. I feel so much stronger just knowing all of you are there with me. Such a wonderful feeling knowing I am not alone, although I wish this on no one.