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Relapse of .m.e caused by sepsis ..now experiencing constant pain ..

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sally_14743
sally_14743

Hi ..my husband has had m.e/CFs for 6 years now . He has been seen by the  m.e clinic in our local hospital and allocated a occupational therapist. He was helped with CBT and graded therapy..he had gradually improved due to this ..he at is worst experienced extreme fatigue headaches dizziness brain fog and a whole range of other symptoms but no pain...he has been unable to work for 4 years now ..but last spring he had improved enough to start planning to ease back into work by doing a day a week voluntary work ..he didn't reach that goal as he got a urinary tract infection which turned into sepsis (this is a risk for people with m.e. And diabetes which he also has) he was hospitalised for one night and intravenous penicillin etc reversed the sepsis...since then he is in constant pain in his legs and lower back .. when he walks his legs give way beneath him after a short distance so he now uses a four wheel pusher with a seat.. he has a bath board for showering a perching seat for the kitchen.. and he can barely climb the stairs so has an additional hand rail fitted .. he used to have a little energy each morning then slept in the afternoon etc now has no energy at all.. but it's the pain which is new and any advice on pain relief would be welcome ..over the counter pain relief doesn't touch it , hot baths ease it only when in the bath..hot water bottle lowers it slightly .. it's constant aching sometimes shooting and it moves about in his legs .. he has been prepscribed gabapentin but the addictiveness has put us off taking .. any advice for herbal, natural remedies please... he is seeing his OT again and has found his base line and starting to pace himself so hoping he will gradually improve but going to be slow long haul.. it's the pain that's new and so wearing .. yours Sally 

0 likes, 7 replies

7 Replies

  • jackie00198
    jackie00198 sally_14743

    Posted

    Is it nerve pain? In other words, does he have burning, tingling, shooting pains, heaviness in legs? If so, Google "nerve pain remedies" and see what comes up. Neurontin is sometimes prescribed for nerve pain, in addition to gabapentin. (I realize this is not herbal.)

    • sally_14743
      sally_14743 jackie00198

      Posted

      The specialist is saying nerve pain.. he says he doesn't have burning or tingling but he has shooting pain and heaviness .. thankyou I will google ..doesn't have to only be herbal . 

      It is neurotic he has been prepscribed .. 

    • jackie00198
      jackie00198 sally_14743

      Posted

      By the way, Sally, the same thing happened to me as to your husband. I'd had no nerve pain--or any pain, for that matter. Then I had a relapse, which introduced new symptoms, including the nerve pain and much more fatigue. Now, it's hard for me to even talk on the phone. Projecting my voice increases my nerve pain. Who even knew this could happen.

    • sally_14743
      sally_14743 jackie00198

      Posted

      How awful for you . His pain increases if he does more than his base line ...his base line being what he can do each day without getting worse. This illness is definitely about compromised immune system .. although he didn't end up in intensive care he has been left with the symptoms people have who have been in ic. Because he was already weakened by his m.e. Before he suffered sepsis. If you google sepsis syndrome it's symptoms are so similar to cfs ..anyway going to go to health food shop today get some immune strengthening herbs echinacea  etc and some that help nerves repair ..turmeric and omega 3 fish oils , valerian etc so thankyou and I hope you improve . 10 percent rule apparently works per week but so hard to not do more ..

  • KPD
    KPD sally_14743

    Posted

    So sorry your husband is experiencing so much pain, Sally. If the doctor prescirbed gabapentin, I would encourage him to try it. I've heard it helps so much with people who suffer with pain, and I have never heard of it being addictive. Good luck! KPD

    • sally_14743
      sally_14743 KPD

      Posted

      thankyou 

      I am afraid I googled how to come off of it 😱 Then discovered how hard it is to do that . Also it is used to help people come off heroin like methadone.. I am not saying he won't take it ever but right now he wants to try not to ..and having the pain he can monitor if he has got his pacing right or wrong as the pain increases if he exerts too much energy and decreases if he gets it right ..hoping he doesn't have to take it .. and he improves ..

  • sally_14743
    sally_14743

    Posted

    Update 

    my husband is now pain free 

    now the ot etc agree it was post sepsis syndrome not m.e. 

    It sarted to ease 12 months after he had the sepsis and now he has been painfree for months.. 

    just in case anyone else has this after sepsis it does go away ..

    he is still fatigued etc but improving slowly with pacing 

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