Extree fatigue with CRPS
Posted , 15 users are following.
My 16 yr old son was diagnosed Aug 2014 after 14 months of uncertainty. The last 2 'flare ups' have resulted in him sleeping excessively (17 hours a day) and feeling very lethargic. Does anyone else feel like this, and do you have any recommendations of how to improve this?
0 likes, 15 replies
graeme89153 sally1711
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tania98828 graeme89153
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Just wondering if you are on any medication now and if you are totally pain free? Do you consider yourself to no longer have CRPS?
I hope your reply says you are free of this awful condition.
graeme89153 tania98828
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Sleepyhead13 sally1711
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If he's too tired to eat ask your doctor about seeing a Dietician for high energy foods or drinks, they maybe able to suggest build up drinks which means you just have to drink instead of find the energy to eat a full meal. It's important that you inform your doctor of any chances such as unusual extreme tiredness as they maybe able to suggest new things. I'm currently trialling hyperbaric oxygen therapy as I've heard it helps some people with there crps symptoms such as fatigue. I'd suggest looking at treatments for Chronic fatigue syndrome and if you find something you think may help check that It won't do any harm to his CRPS that way you can treat the fatigue at least. I hope this helps!
slebby33 sally1711
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tania98828 slebby33
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Sick also of friends, family and general public not getting the condition but I guess when I don't even truly understand it, it's hard to explain to others. All the very best to you and I TRULY DON'T MIND IF YOU ARE SHOUTING, IT'S HEAPS EASIER FOR ME TO READ! lol
peter90548 sally1711
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tania98828 peter90548
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raynaybubbles sally1711
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DebbieO sally1711
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Rajur sally1711
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I could tell you that fatigue is a normal symptom and you might feel comiserated, but what if I could say that pain, fatigue levels etc., can be manipulated and renormalized?
I am over CRPS now for the last two years. No one can promise any other patient how he/she will or will not progress. However, I do know that the brain has plasticity and change can slowly be made.
google "Reversing Chronic CRPS" for a more in-depth and personal description of my journey into the depths of CRPS hell... and after years of suffering, back to the land of the living.
There is hope.
kay92287 Rajur
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please any suggestions would ve appreciated. my daughter has had it for 4 years. she had it in 6 th grade it was in remission and then came back freshman year of college
karyn25555 kay92287
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Dr. Brandon Crawford in Cedar Park Texas. He keeps my daughters CRPS in control and she's almost 100% pain free. She's had involvement in all 4 limbs for 4 years. I don't think I could accurately explain what he does but it works, for real, after trying every kind of therapy and drug- we went to see him and he was able to bring my daughters pain from an 8 to a 2 in 2 weeks with his treatments. She went from not being able to get out of the car to running a 5k. He doesn't use medicine at all. He uses brain balance techniques. We go once every three weeks for 20 minutes I'm so thankful we found him, otherwise I don't know what we would have done because nothing else worked. My daughter is now a cheerleader, jogs and exercises everyday, and is happy and close to painfree.
gerard10657 sally1711
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I would say heated swimming pools have helped me exercise as cold water is like fire to me it has to be heated for me. Also cod liver oil supplements or natural energy tablets. Also mediation or hypnosis has helped me cope better with the pain
Laney_Lu sally1711
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Hi Sally,
I'm so sorry your son is suffering, he's so young. My 1st unreal flare, the one that hit home in admitting I have more than Fibromyalgia had me unable to keep my eyes open. As if I was in some black out drunk (don't drink, but did long ago). I was afraid to sleep as I was hit with insomnia June 2016 and only began getting 5 hours sleep in January 2017. But since I literally was unable to function I did go back to bed, took two 2 hour naps and had no problem sleeping at night. That was on a Monday, then Tuesday the pain was a bit less and I did need to take one nap that day. What's been helping me is lots of prayer in asking for His quidance as to what I should do, listening, and going with what my gut is telling me. I also began using 100% pure essential oils since January, I drink homemade ginger water everyday. Have to stay away for gluten, any form of sugar (I use Xylitol that comes from the bark of Northern hardwood trees), and I stay away from dairy products. I LOVE ice cream so it's been hard, but after flares I'm afraid to eat any real ice cream, meaning full on milk and cream, do sneek in a Dairy Queen that hasn't hurt me so far. As long as I stay as stress free as possible, don't eat processed foods and what I've mentioned, I am finding if my body says sleep, that I sleep. Organic foods like Apples are great for us, the more organic salads especially spinach salads, the better I feel. Organic Green Tea has caffine in it, I use that to help me with fatique. I don't do coffee as much as I love it, triggers anxiety. Hope other's have given you ideas that you can try. We are all different, affected differently, and we all respond to different approaches. I've added praying deeply for anyone who's in physical pain at the beginning and end of my prayers.