Crushing Fatigue and Pain
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| Sun, 08-21-2005 - 2:45am |
I have not been on this board in weeks. All winter I was doing tests and trying to find the best solutions for my Crohn's and the crushing fatigue and pain from my waste down to my ankles. The miracle drug Remicade that I had fought for so long, that my insurance denied me four times, has not yet helped me in any appreciable manner. Actually I was able to get off my other Crohn's drugs and finally the prednisone so maybe it has helped the Crohn's symptoms. But I was left with the arthritis pain, the spine, hips, legs, knees (oh god, the knees) and ankles and oddly my wrists. The fatifue from the constant pain, the Vicoden, the Tylenol (with Crohn's I am very limited in the anti inflammatories I can ingest) was making my life a non life. I felt like staying in bed all the time. BUT I have a job Monday through Friday, I am my sole support, my grandson is 6 and I have had him often, with my son courting his second wife and planning their marriage and now honeymoon. I could not continue as I was. So I started on 10 mgs of prednisone again, to get through the wedding in California where the girl's parents live (we live in Seattle), the time and attention needed for my grandson and meeting all the new people, seeing my own family again who lives in California.
So I am back on the prednisone and also was prescribed Wellbutrin which was really helpful. My god, I feel so much better! I have even lost 15 of the 25 pounds I gained over the winter because Wellbutrin leaves me with no appetite. I actually feel like doing things again and I need to feel like that because I am moving in a month to be near my son and his new wife's new home so I can continue to be a part of my grandson's life and the new babies that will come.
I am just venting here but maybe someone will get something from the Wellbutrin thing. I know all these drugs are so individual. One will help one person and not another. My biggest disappointment was the Remicade. But as I said, perhaps it has helped my Crohn's symptoms as I rarely have them, only occasionally.
I had been so depressed over the winter, losing my body shape, losing my energy, losing hope. And now I have come to terms with the fact that I may never get my body shape as it was but it can be better and it is. I may never feel like I did, never have that energy again. But I am better than I was last year at this time. It has been a year this month that I had my first huge Crohn's flares and was hospitalized three times and found my wonderful GI doc who has helped me so much. He is the one who said Wellbutrin has shown to help Crohn's.
Maybe I am on the wrong board here. But I like you guys on this board so hope you don't mind hearing me rant again.
Going back to bed now.

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((((((((((((( Donna )))))))))))))))), you have really been through the wringer.
Molly
HI Molly,
I am up early as I often am unless I take a whole Ambien. I took a half, since my insurance only pays for 14 in 24 days. I need it every night to sleep. They denied it even though my doc sent a special authorization. The insurance company came back with it is "investigative" still. Right.
Today my grandson is 7 and they have moved away from me to another suburb of Seattle. So I am alone here and only moved here 6 years ago because they were here. So I have been apt hunting for two weeks and plan my move there in October. And with the prednisone I feel like I will be able to prepare for this move. I will stay on the prednisone until something else makes me feel like I can function in my life. With the Wellbutrin I don't get the hunger like I normally would with pred.
I get my next Remicade infusion on Monday. I saw no improvement from the last one for my arthritis symptoms. But have had no bad Crohn's symptoms so perhaps it is working. For the nearly $4000 it costs (I am not paying it, of course) it should do something. But it is the arthritis symptoms that bring me down and the only thing that helps it is prednisone and of course Vicoden.
I am back on Match and wonder if anyone will want me. Or if I will want anyone. It should be interesting. I have done this before off and on for years and then always quit after not meeting that special someone. I really need to get out and do some things so I have a chance to meet people and find new friends.
I recommend the Wellbutrin and don't know why it works with people who have Crohn's, but it does lift one out of depression and fatigue. That always helps. I still am feeling alone and depressed but that's because I am old and alone, not so much the disease. My plan to retire in Mexico is gone by the wayside for now. I need to be sure my health is taken care of before I do something radical like that. I wonder if it ever will be up to that.
Okay, thanks for listening. Back to bed.
Donna, I think the best thing you can do is to be close to your grandson and family. Now, my parents lived next door to me for 25 years. I do NOT recommend this, but close enough to visit would be a good idea. My son and his family live a 2 hour drive away and I would give anything to be closer to them. My ddg (Julia) told me last night on the phone again, "why you no move close to me?" Breaks my heart!! "Me need you, me want you now!" I tell her to have her mommy and daddy move here. I am sure that goes over real well!!! HAHAHAHAHA!!!!
I can not understand why Ambien is denied. Are you sure your doctor is trying "hard enough"? It is not a new drug. I tried it over 8 years ago for sleep issues due to fibromyaglia and stress. It knocked me out right away, but in 5 hours I was wide awake and could not go back to sleep. I use Trazodone and Restoril for sleep. This works well for me.
Sending you lots of ((((gentle hugs))))),
Vicki
(((((((((((( Donna )))))))))))), I'm always happy to listen to you.
Molly
You are still watching the same trashy TV I do.
I am moving Oct 1 and will keep the Wellbutrin and the 10mg pred until I have completed that and/or until they find something else that works.
I can get Ambien but only 14 in 25 days. I need it every night. So I take Xanax when I don't have Ambien. I am so sick of insurance companies telling docs what they can and cannot prescribe for their patients.
I just got back from my grandson's 7th birthday. My new daughter-in-lw of less than two weeks is a bit blue, coming back from a gorgeous wedding, a honeymoon in paradise with the man she loves to reality, work, kid and a house that my son had just moved into just before they left to California to be married. She is having a bit of post wedding blues and I spotted it right away and we talked.
Gotta get to bed. Oh, and when I take only half an Ambien which my friends say they do, I wake up in 4 hours.
It will cost me to move and I will pay more rent. But I won't feel so lonely any more. The long term plan, down the road is that my son and his new wife will probably move again in 2-5 years, he will be transferred to a warmer climate (we hope) and we will all move together and I will live in a mother-in-law apt, which I sort of hinted at this time but I knew it was not right at this time. They need to start their life together without the mother in law around that closely and I will be able to work a few more years I sure hope. When I stop working I stop travelling. That really will kill me.
Mostly I think I don't want a man. I like being alone just fine. But I do feel lonely sometimes and I don't want my son and his wife to feel that they have to "take care of me" emotionally or any other way, at least not until it is necessary. And it would be fun to not carry the whole burden myself, financially and emotionally. It would be nice to have a travel companion, a friend to talk to. So I am on Match and have already had many emails. I have done this before and met some really nice men that were friends for a long time. But I am alone still so that says something I guess. Mostly about me. I am too picky or just really don't want a man enough :-)
Molly
Donna, I think the mother-in-law apt. sounds great.
Molly
I completely agree with you about the being separate but close as I too need my privacy and actually enjoy being alone.
I also completely agree and feel the same exact way about a man in my life. I will not compromise myself for someone ever again. So I will continue to be picky and probably continue to be alone, although some things would certainly be easier if I weren't.
Gee, all this talk and not one word about our illness. Wonderful!
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