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Suffering with dysaesthesia still can't find something that helps?

Posted , 5 users are following.

sarah09489
sarah09489

I've been suffering from a condition called dysaesthesia for nearly 2 years. So I've had a nerve condution test, MRI and been put on different types of medication and also used a tens machine. Does anybody else have this conditon if so what helped you cope with it.

0 likes, 16 replies

16 Replies

  • tara45220
    tara45220 sarah09489

    Posted

    sorry to hear it......its very frustrating I know. Were you checked for Lymes Disease??? rule that out, just in case.
  • tara45220
    tara45220 sarah09489

    Posted

    Well Im not a big Lymes Disease crusader and I  never dreamed I could have that problem, but after 8 years of very slowly suffering the neuropathic symptoms{started very small and mild, and so unnoticeable at first that I never took no mind....a little numbness here, a quick tingle there, am 50 pounds overweight and figured I had a pinched nerve} I started all the tests and the  scans and all that, and it as only after a year of seeing docs that  One rheumatologist {and I  saw four} finally said lets rule out Lymes Disease.

    No way, I said, Ive never had the symptoms.

    Guess what..I was positive, and all 10 bands showed up positive indicating Id had this for a VERY long time.By that point I was suffering unbelievable  exhaustion, brain fog, dizzying fatigue, memory loss, inability to stand or walk for more than 20 minutes at a time and very awful sensations of ice  cold or red hot numbness in my feet, also a sense that someone had them in a clamp and was squeezing all the blood out of my feet.Middle of the night was awful. Had a month long dose of anti biotic and things are better, not I hope to heal the small nerve fivbers that were damaged. With healthy eating, supplements and excersise whenever I can stand it theres been lots of improvement but I have a ways to go. Im only sorry years ago when friends said Lymes Disease i didnt say, "yeah, thats all made up or exaggerated....and besides, I never had a bullseye tick bite" I could have saved myself a world of discomfort and inconvenience.

    At least you'd have the satisfaction of knowing you rules it out. Good luck to you...its a rotten thing to deal with.

    • sarah09489
      sarah09489 tara45220

      Posted

      My boyfriend actually got tested for lymes disease and cos of a canal being behind where he lives but his results came negative. So he knew I wouldn't have it either.

  • gary44503
    gary44503 sarah09489

    Posted

    HI Sarah, I know how you fell. I have tried everything i could find. It got to the point that I though doctors Thought I was making it up. I have tried just accepting it. Not really but I'm trying. From my personal experience I have got some relief from medical marijuana. It's not a cure and dose have other effects but itdose give some relief. Also omega 3, tummeric helps nerve relief. Some of the meds that doctors gave me made it worse. Not having the answers is horrible l have been suffering for 3 years now.i wish you luck with whatever you try. Gary

    • sarah09489
      sarah09489 gary44503

      Posted

      I understand how you feel my doctors just keep putting me on medication that causes more problems with side effects than actually helps. I try a tens machine when I first got diagnosed with but after months of using it on regular basis that no longer. I take supplements, but don't see any improvements. I was told about hemp oil apparently that can help

    • tara45220
      tara45220 sarah09489

      Posted

      I tried the CBD oil on myself and my son. For my pain and his agitation. There was some good results initially...but I honestly didnt see the  big miracle effect, perhaps smoking it is what really gives you the results, obviously they dont want you to get the THC and I dont want that either, Im losing enough marbles as it is and need to concentrate very hard to get things done around here. Sometimes the oil worked on my son...but..eventually we found Guafacine {for his problems}was a magic bullet...which is a shame, I prefer going natural. But the oil was also 200 dollars a bottle, and no insurance company will touch it. And I can see why... its not that efficacious....yet.

  • tara45220
    tara45220 sarah09489

    Posted

    Boy youre right there.Lyrica made me go out of my mind, and I wept for hours. Gapapentun has been very helpful but only in small  doses just before i go to bed...600 mgs max{Normal dose is 1600} But thats way too much for me.Makes you very dizzy and sleepy if you take too much during the day time.

    One thing I find myself doing is reaaranging my life to make sure stenuous things I might have to do are always first thing in the morning before the pain and fatigue set in.I have improved a lot since March thanks to nutritive supplements and although Im not my old self Im SO GRATEFUL to have as much as I do...compared to what I was last winter....I take what I can get and make the most of it.

  • gary44503
    gary44503 sarah09489

    Posted

    HI Tara, I do the same thing. I have two teenagers at home so everything is prepared in the morning like dinner because I know by noon I'm useless. Life is a total struggle but they will always be worth it to me. I gave up on gabapintin and all pain killers. They should change the name to life killers.  Take care, Gary

    • tara45220
      tara45220 gary44503

      Posted

      Gapapentun did nothing for you???   I cant live without it, and even I only take 600 before bed. But then, I consider myself one of the lucky ones. I still measure out how I do things during the day, cause although Im much improved it can be hit or miss. I used to have  sometimes what I call my Victorian Days where I am so weak and tired all I can do is sit in my bedroom and look out the window {or sew or read or sleep}  like I was wasting away from some serious condition...as I said my strengh is much improved but I can still have days like that.Sometimes if we are going somewhere I make sure theres a good book and a quilt in the car and all my fave music because I may have to retreat to the car and sppend some time there, as I dont want to wreck the familys good time by saying I need to go home. {We have a van so its quite comfy} But this thing sure interuppts your life.

      You were never checked for Lymes?

    • gary44503
      gary44503 tara45220

      Posted

      What started my severe nerve damage was a rare form of brain damage called central pontine mylinosis. They don't know how to treat it so I was put on so many different meds like a test dummy. I was comatose for many months. Now I can hardly get around the house but I do. Funny you should mention K-mart. I was a general manager for them for 20 years before my condition crippled me. I so wish to be normal again but have to face the reality of life! I'm not and never will. Sorry I starting to fell sorry for myself again. Bye

    • sarah09489
      sarah09489 gary44503

      Posted

      Hi Gary,

      I absolutely understand your problem my doctors also treat me as a test dummy. I've been put on everything from naproxen to now pregabalin and it causes more problems than helps with the pain. I would suggest you try a hot water bottle or get a ten machine

  • tara45220
    tara45220 sarah09489

    Posted

    Yes!!! its  called the "hit the ground running" approach. 

    I feel Im one of the lucky ones as my problem evidently may have been the Lymes, which was halted leaving me with post Lymes neurapathy, but at least the ongoing damage was stopped and I can concentrate on growing nerve endings back again which i discovered  TAKES A VERY LONG TIME. Youre also dealing with sensory AND motor nerves and I find the motor grow back a little sooner, although its like one millimeter a month. This might go faster if I wasnt 61!! anyway Im the full time care taker to an autistic son with the mind of a toddler, non verbal with epilepsy, and while My nerve endings were disappearing he developed a conditopn called Psycho Motor Agitation, which means he goes nuts for about half and hour 10 times  a day. It was a nightmare, but long story short we got through it.He is on several antipsycotic meds three times a day and we got him into a good day program for a large part so things are stabilized but last winter and spring was a NIGHTMARE. We would be in K Mart and I would be OK for 20 minutes of walking and start to collapse{and Im a big athletic German girl, last summer I was biking 7 miles around our town park with no problem} But it all disappaeared in a matter of months and I could only shop clinging to my shopping cart and even that got too painful to do.

    • sarah09489
      sarah09489 tara45220

      Posted

      I'm only 24 and due to gabapentin and pregabalin I'm suffering from severe acid reflux which causes indigestion and in my case nausea, fever and sickness. My dysaesthesia just happened out of no where but when I was born I was starved of oxygen. I believe that caused problems with signals between my brain and body.

  • dawne13980
    dawne13980 sarah09489

    Posted

    hi Sarah,

    oh i feel your pain, i have had this now for just over 4 years, ive had every test known to man lovey. i hope you reply, i thought i was the only one. its agony at times xx

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