Hello Andrea; I know you are going to get lots of responses. I just lost the person who was my partner to death. However; I had been married before, and he didn't tolerate my problems well. Yes, people do look at you and say, but you look healthy. I've had this problem since 1992, with two subsequent episodes or flares that were debilitating. Yet, each time I went back to work at a certain point as an RN. You don't mention what your husband is trying. It sounds like he gets around. I always got to where I could walk again, but it was very fatiguing. And, the fatigue has never went away. Nor has the pain from the tight banding to the burning and tingling with frequent stabbing pains here and there. Anger...it happens to me if I take gaberpantin or Neuronitn. I've been told a lot of people have this reaction. Depression. It is so common with TM, I have a heck of a time convincing neurologists I'm not depressed. I really liked Cymbalta but I can't tolerate it or Lyrica due to my diabetes. But, it works really good for those who can tolerate it. Celexa or Lexapro helps a lot with my trouble concentrating and remembering things. I got to where I couldn't sleep. And, the twitching and jerking and inability to get comfortable can play havoc on ones sex life. Requip was the answer for me. I don't twitch near as bad. I used to take baclofen but it didn't work after a while. I take Vicodin for the burning in my feet. Sheets drive me nuts. And, with this last episode CPAP became necessary. Believe it or not, being able to breathe at night really improved my mood swings. It had never occurred to me that not breathing at night was a problem. I'm not that big. nuvigil gets me going in the day, but the physical fatigue remains. Cramping and charlie horse every night if I've been active for, I guess it's going on 20 years. But, if I can sleep good, it doesn't get on my nerves so bad. Bending, reaching under things, getting things from under the bed, make me dizzy. Dizzy equals sick or very irritable for me. I didn't realize that this was influencing me to avoid certain activities for awhile. Bottom line is there are some alternatives, but you probably have to be proactive. I've heard "can't do anything" and "live with it" or at least you're walking and you can squeeze and push on neuro checks from many doctors. And, that is frustrating for someone who is in constant pain and has no energy. (Vertigo is a miserable way to be, too.) But, finally, I have found something that works for me. And, it is a big relief. If I understood you right, you said 6 months. I have all three times saw changes at about 1 year. Hang in there. It is hard. You need a way to "sound off" and release frustration. Caregivers can become ill, too. Please look out for yourself. Pam
Date: Mon, 10 Oct 2011 14:38:19 +0100 From: [email protected] To: [email protected] Subject: [TMIC] How can a spouse help? Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
