Extree fatigue with CRPS

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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?

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  • Posted

    Hi, I might be able to help you because I've had a similar experience in the past. I was 15 when I broke my arm 21/09/11, after the 6-8 weeks of immobilisation my arm hurt even more than when the actual fracture was present. I got diagnosed with CRPS on 14/2/12 it started in my right shoulder/arm/hand, I found at night time my pain was so severe I played in bed for hours trying to get to sleep. People who weren't aware of my condition called me lazy because all I did was sleep all the time I had to abandon school because one night I literally felt a sharp pain which was unexpected in my other arm which was later diagnosed as CRPS in a second limb and I physically couldn't move my arm at this time couldn't grip pens or pencils, type or write due to the tremors and excruciating pain. A few weeks later I was walking on uneven terrain and stood on a rock and was followed by a familiar pain in my left leg and surely enough it was CRPS IN A THIRD limb. I sometimes didn't actually get to sleep just played there awake all night because the pain is unbareable. The good news is all though it seems bad now it can go into remission very quickly it took a lot of pain medication ketamine infusions, nerve block injections, lyrical, oxyconton mixed with physio, both ocupational, and normal physio but after trailing all this and setting my self small goal to tick off each week I found myself moving a step closer to getting back to a normal pre-condition life style and by April 2013 I was able to tolirate most things also participating in sport again. The thing that helped me the most was getting to regular check ups with your pain specialists and challenging myself that's the only way to beat the condition try and stay as active as possible. I'm sorry if this reply is too long, but I thought I'd share my story and tell you it might look gloomy now, but as I found out first hand once you find that little Ray of sunshine it can take turn for the better very rapidly.
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    • Posted

      HI Graeme,

      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.

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    • Posted

      Hi, sorry to reply so late, okay I'll give you an update on my situation, I have been off medication since mid 2013 I can can manage my pain at the moment it really isn't too bad as close to symptom free as I can get although I still struggle from time to time. I have noticed my sense of pain has changed dramatically little bumps and knocks seem to hurt quite a lot. I still have cynical symptoms of CRPS, but I've gotten better at managing my pain and pushing myself to get through the activities I enjoy although never push through severe discomfort pain. The doctors at the time said I was lucky to be unlucky enough to get this at my age because I'm still young and mobile which the younger you're the more chance to get back to a somewhat normal lifestyle. The psychological issues are still affecting me because I shut myself off to all my friends when I battled this condition and distanced myself from anyone other than my doctors or family due to this I lost friends. The bottom line is my pain is so much better, but I feel it everyday. I hope my story can give you hope obviously every case is different, but my doctors were surprised by how well I reacted to the combination of medication/enfusions/physio/occupational therapy. This is such a tough condition to overcome and I hope you have some success with it because it required every inch of will power I had to get up each day and do physio or occupation therapy. If you've any questions feel free to ask me.
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  • Posted

    Hi I'm 17 and I've had CRPS in all four of my limbs since I was 7. This is so common for me. I've spent weeks at a time where I'd not see my family as I'd just be woken to drink and eat and go toilet then I'd go straight back to sleep and then when I did wake up it would be the middle of the night so everyone was fast asleep. I started to display signs and symptoms of m.e (also known as chronic fatigue syndrome) but I was told by great Ormond street hospital not to separate the symptoms and call it m.e as its all part of CRPS. It just comes secondary to having the condition. When I have a flare up I sleep for days and it usually doesn't improve until the flare up calms down which has taken weeks before, what we call the 'recovery phase' it maybe he's just recovering from the flare up. The best advice I can give you is go to the doctors and get it checked out just in case it's m.e running along side the CRPS. Watch out for any signs and symptoms of m.e if you need any advice on m.e check out ayme... The assiosstion of young people with m.e. 

    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! smile

     

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  • Posted

    HI SALLY1711,SO SORRY TO HER YOUR SON HAS THIS DREADFUL DISEASE.SUCH A TENDER AE.MY EART GOES OUT TO HIM,ND YOU ALL,HS FAMILY,I JINED A SUPPORT GOUP ON FB CALLED CRS/RSDFIGHTERS.THEY ARE SO KIND,LOVING AND SUPPORTIVE,AND AVE MEMBERS YOUR SONS AGE.I AM BEDBOUND WITH CRPS,AND DUE TO MY INTERCOSTAL NERVE BEING AFFECTED,IT MAKES YOUR CHEST HURT TO TAKE DEEP BREATHS! SO SUBCONSCIOUSLY IM TAING SHALLOW BREATHS BECAUSE OF INTERCOSTAL NERVE PAIN,FRONT ND BACK OF RIBCAGE! SO PLEASE ASK OUR SON TO TAK TEN DEEP BREATHS,EVN F IT HURTS,O STOP BASE OF LUNGS COLLASING! CRPS ATTACKS THE RESPIRATORY SYSTEM,INFACT ALL INTERNAL ORGANS,DIGESTVE SYSTEM AND VASCULAR SYSTEM.IT IS SYSTEMIC,SO NO AMOUNT OF MIND OVER MATTER WILL HELP.BUT IS SOOOO IMPORTANT TO REMAIN AS ACTIVE AS POSSIBLE,NO PROCESSED FOODS,NO NICOTINE,EXCESS ALCOHOLNO CAFFIENE! BUT MOST OF ALL,NOOOO STRESS! IT LEADS TO SPREADS AND FLARE UPS! I FIND AND MANY OTHERS  KNOW WITH CRPS,THAT FATIGUE IS A MJOR PROBLEM! ONE HOSPITAL TRIP CAN WIPE ME OUT FOR -5 DAYS! PLEASE GET YOUR SONS OXYGEN LEVELS CHECKED (SATS) JUST TO CHECK HIS RESPIRATORY SYSTEM IS OK.I WOULD INVEST IN A SATS MACHINE,JUST POBE THAT GOES ON HIS FINGER.DOES PULSE ALSO.I WISH YOU ALL THE VERY BEST SWEETHEART,LOVE SLEBBY33,XXXXXX P.S,I'M NOT SHOUTING,JUST HANDS TOO PAINFUL TO STRETCH FROM SHIFT KEY TO LETTER.NO CAS LOOKS AWFUL! SO SORRY CAPS ON!X
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    • Posted

      Slebby33 my thoughts are with you, I hope you manage to kick this awful CRPS's butt! So glad you mentioned mind over matter as I am so very sick of medical professionals thinking that its all just in your head. Ahhh.

      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

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  • Posted

    Hi sally h'es not alone I was diagnosed with crps i 2006 and sometimes I can sleep like a doormouse,Lets not forget as well as the meds we take for crps which sometimes make us tired our bodies are constant stress again through the crps so this also sometimes makes us tired
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    • Posted

      Hi Peter, I also find the broken sleep due to pain and times of insomnia, contribute to my exhaustion.  I can only drive for about 20 min or else I woudl fall asleep at the wheel.  Think thats the 300mg of Lyrica I take twice a day though. hmm.
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  • Posted

    I have a similar although different situation. I'm tired all the time, however unable to sleep. I sleep about 4-5 hours a night befor I wake up even without an alarm and then can't get back to sleep after. This has been going on since my crps developed back in February of this year.
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  • Posted

    I too have CRPS ll since 2011 due to a fall.  My fatigue has worsened over the years and I'm now spending 2-3 days a week in bed.  I can't sleep but I'm too tired to do anthing else.  I've tried Nuvigil which seemed to help quite a bit but I can't get a refill until I get a sleep test completed. I've also tried B12 injections which worked for a while too.  The problem is that nothing seems to be a long term benefit.   My body gets used to something and then it no longer helps.  Is your son under the care of. Pain specialist?
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  • Posted

    I had CRPS for 5 years. The brains command and control system gets confused as to what level to trigger systems response. Fatigue, range of motion, proprioception, temperature control, lymphatic system, immune response etc., are all systems monitored and controlled by the brain. 

    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.

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  • Posted

    Yes Sally I was diagnosed at 8 with reflex neurovascular dystrophy which today is known as complex regional pain syndrome. Fortunately for me I only had it then for just over a year. I am now 34 and hard to say came back 4 years ago first in hand then foot. Other than the pain, extreme fatigue short term memory fuzziness poor sleep patterns are huge problems I suffer with. Hope your son is getting best help he can.

    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

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  • Posted

    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.

     

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