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One sided symptoms?

Discussion in 'General ME/CFS Discussion' started by Maria1, May 21, 2016.

  1. Maria1

    Maria1 Silence speaks volumes

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    I've noticed recently my symptoms seem to be settling into a more clearly defined pattern. I've added T3 to my levothyroxine (under the supervision of a NHS endocrinologist) and I feel less brain fogged and a little more energetic.

    My body can't quite keep up with me and I seem to be stiffening up in my muscles as much as before, but recovering more quickly. It feels more pronounced in some ways as it is isolated from the rest of the fatigue. The crashes I'm having feel less overwhelming in that I can isolate the different things going on rather than feeling utterly wiped out all over, if that makes sense.

    I'm noticing that my left side is often achy and heavy, not quite numb exactly. I had been linking this to migraines as I get pain down my entire left side when I get migraine. I take topirimate which means migraines often 'lurk' below the surface, rather than becoming full blown, and I thought this left sided heaviness/pain was a sort of chronic migraine.

    Now I'm putting it all together and realising other symptoms are left sided too. My goiter is on the left. My left eye is dryer ( both are dry and I've scored severe on Schirmer's test). If dropping things it's my left hand that drops things or seems to mess up most with coordination where the two hands need to work together.

    I don't know if I can explain this but I have always felt (before illness) that I see the world through my left side, not just visually, but that my right side didn't feel as important in terms of interfacing with the world. I don't know how to explain it and it may not be important at all but it's strange that I'm having this symptom exacerbation on one side. I don't think it necessarily means anything.

    Anybody else have a clue what I'm talking about?
     
  2. Old Bones

    Old Bones Senior Member

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    @Maria1 Are you right-handed? I ask because in my early ME years, my symptoms (neurological and pain) all occurred on my left side. For example, an extreme ache down my entire left side after eating food preservatives, the sensation of a hot liquid being forced through my left eye, "echo popping" in my left ear, knife-stabbing pain in my left shin. My right side was unaffected.

    My ME doctor described the above as petit-mal seizures -- neurological. He said if I were left-handed, they'd be occurring on my right side. Sorry, I can't provide his reasons for saying this. But you definitely are not alone in experiencing symptoms predominantly on only one side of your body.
     
  3. Maria1

    Maria1 Silence speaks volumes

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    That's interesting @Old Bones. Yes, I'm right handed. Your reply reminded me I had two episodes of localised numbness on my chin about 2 years ago. My chin went red and then went utterly numb, in one particular area. I have no idea now whether it was more on the left or the right!
     
  4. Mrs Sowester

    Mrs Sowester Senior Member

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    Most of my problems are with my right side, I'm right handed so put it down to the fact I use my right side more.
     
    Maria1 likes this.
  5. Deltrus

    Deltrus Senior Member

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    I have one sided symptoms. My hip and shoulder have tension/dysfunction/perceived weakness on my right side. Not too much pain.

    I'm actually quickly recovering though with fredd's protocol.

    I actually think that it is nerve damage due to virus + impingement + metabolic malfunction.

    The reason why it is on my right side is that my right side had more repetitive movement and thus the inflammation/oxidation/impingement came faster. The ball never really got rolling on my left side.

    In the leg/groin area, there are some muscles that reach from there all the way up to the neck, and these muscles need a certain constant tension to keep everything in balance. If everything doesn't balance properly, nerves and blood vessels in the pelvis get pinched, and the muscles going upward to the neck don't work. The shoulder blade / neck starts to mess up, and you start to learn towards the dysfunctional side.

    All of this starts with weakness in areas a person takes for granted.

    At first I had to take resveratrol 500 mg with black pepper to get me started, as my anti-oxidant systems weren't working well. I don't take it much atm.

    I start my mornings off with coffee + 50 mg b2/b6 + 10 mg manganese + 200 mg magnesium + 30 mg zinc + 3 mg copper. When I first started I had way too much copper but now I have to take it.

    After a while, I take my vitamin C and ALA (it is important to take these later because they can chelate the minerals).

    Then I take b12 until I can feel it a bit, usually I need to take 5-10 mg, then I take folate as needed afterwards.

    I redose ALA and vit C every 2-3 hours, and take thirds of a multivitamin throughout the day.

    Every few days I megadose 2 g thiamine, which seems to help greatly, but for some reason thiamine doesn't work every day.

    The ALA is absolutely essential for me, it increases glutathione. Often after taking it I can feel sensations of nerves reactivating. Nothing works for me unless I take the low dose ALA.

    My regimen that I'm following was fairly rough at first, I'd keep getting fatigue and crashing, but it is slowly getting more reliable, and physical therapy is showing effectiveness.

    I think my problem may be a form of https://en.wikipedia.org/wiki/Subacute_combined_degeneration_of_spinal_cord

    and also I have poor proprioception which is slowly improving.

    And also there may be a virus that my body is having a hard time keeping down that starts to proliferate in dysfunctional areas due to the oxidative stress.
     
    Last edited: May 21, 2016
    picante likes this.
  6. alicec

    alicec Senior Member

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    I am left handed and have neurological symptoms on the right side - tingling, numbness, transient mild paralysis, sharp stabbing pains, plus a more generalised achiness.

    I've never thought of it as petit-mal, more as mild nerve damage/irritation (though nothing shows on a neurological exam or MRI of brain and cord) - presumably it's still at the irritation stage.

    Are you left handed?

    That fits with my experience, though of course I am guessing.

    Freddd's protocol helps me too though recently I went through a hypersensitive stage (still can't get to the bottom of this) and had to abandon it for a while.

    My right sided symptoms got much worse - actually everything got worse!.

    Suddenly I seem to be more tolerant of the DQ so am hoping that by ramping up I can settle some symptoms and maybe get back a bit of energy.
     
  7. Deltrus

    Deltrus Senior Member

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    I'm right handed with right side symptoms.

    I went through a hypersensitivity stage somewhat in which b2/multivitamin etc caused tons of fatigue. Turns out it was my immune system starting to work better but didn't have enough glutathione to support it, the ALA fixed it, and after that the b12/folate started becoming much more effective. The thiamine megadose every now and then also seems very important to me, maybe I have a malabsorbtion problem that is overcome by megadosing.

    I think hypersensitivity is when there is a massive roadblock/chokepoint. When you supplement one thing it puts even more demand on the stuff you have the lowest supllies of.
     
  8. alicec

    alicec Senior Member

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    I agree entirely and have turned myself inside out trying to identify what this limiting factor is. So far nothing obvious!
     
  9. Deltrus

    Deltrus Senior Member

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    So far for me, the major chokepoints have been ALA(low dose), Copper, Thiamine(megadose), B12, and folate. Everything else has stayed around the same demand, although b2 and manganese sometimes give much better results than normal. I'm not sure if biotin has ever been a roadblock but occasionally I take 10 mg.

    Edit: and at some stages I needed resveratrol as "training wheels" for my antioxidant system. Resveratrol is great.

    In addition to supplementation, one of the key things to do when you have one side symptoms is to try to tighten you core muscles and hip muscles, and compare sides, then try to exercise and strengthen weakened/achy muscles.
     
    Last edited: May 21, 2016
  10. Maria1

    Maria1 Silence speaks volumes

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    Fredd's protocol is way beyond me.

    My limited energy and brain function is spent on parenting and keeping myself dressed and functioning. I take thyroid meds, topirimate iron and vitamin D. These are in a dosette box, provided by the chemist. Despite this, I often forget a dose.

    I try to take coq10, selenium, flax seed and a couple of others others on top but probably only remember half the time. I do know that addressing vitamin deficiencies played a part in my getting a bit better, so I'm sure there's something in Fredd's protocol. It's just that the energy and time that I would have to put in to it would actually be impossible for me currently.

    This one sided thing is interesting for me as it is one more piece, and a significant one, in just how much my brain is affected by whatever this illness is. Because I can feel it all much more in one side right now, it feels as if the brain is 'leading' the symptoms. Whether it's a virus, or some sort of damage, it's as if I can feel it's settled in my brain area. At least that's how it feels instinctively, today anyway.
     
  11. Deltrus

    Deltrus Senior Member

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    I feel like that too, it settled in my brain after slowly crawling up through my neck and jaw. And yes it takes a TON of energy to do these massive vitamin protocols and tinker with everything. Often you crash hard too.
     
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  12. barbc56

    barbc56 Senior Member

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    Before starting any protocols, I would see your doctor, possibly a referral to a neurologist if warrented.

    There are so many reasons there can have the same symptoms.

    But maybe it's prudent to err on the side of caution. If nothing else, it might give you peace of mind.

    Good luck.
     
    Little Bluestem likes this.

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