General query

[Lee88]

Im in a tough place mentally right now, after my illness has seemed to flare again. I never really had an idea of what was wrong with me. I assumed CFS/ME, what I wondered was can Lyme remit/relapse without treatment? Similar to CFS/ME etc.

I’m worried mostly about my neurological symptoms, for instance I could be reading something on here and my anxiety response to something worrisome, is so strange. An excitory response is normal to an extent, but this doesn’t seem natural. I use to get floaters badly and they are back, my tinnitus is worsening, I’ve got visual snow which never disappeared but was less noticeable. I have recently come off antidepressants and I know that won’t be helping. I’ve been getting burning in my forearms, mostly on my left which also coincidentally seems to have developed dry skin on the same forearm. Muscle tightness, gland pain. Coat hanger type pain, breathing problems. The reason I came off my antidepressant was because one night I suddenly became anxious for no reason and I couldn’t even sit still, all my other old symptoms seemed to return, with added ones in the process.
As you can probably tell I am at the end of my tether, I have no idea what to do with myself.

 

[jesse's mom]

Hi @Lee I have many of your symptoms when I am in a flare. For me. diet has a lot to do with the skin flaking and tinnitus. When I consume wheat and sugar this is really bad times for me. When I eat protein all throughout the day, my days are better as far as concentration and inflammation.

I have many of my symptoms from spinal stenosis and herniated disks in my cervical spine. Have you looked into neck problems as any of your troubles.

All the best to you.

 

[Lee88]

Hi @Lee I have many of your symptoms when I am in a flare. For me. diet has a lot to do with the skin flaking and tinnitus. When I consume wheat and sugar this is really bad times for me. When I eat protein all throughout the day, my days are better as far as concentration and inflammation.

I have many of my symptoms from spinal stenosis and herniated disks in my cervical spine. Have you looked into neck problems as any of your troubles.

All the best to you.

I haven’t, but have been thinking I should, the only thing is that I seemed to improve for a while and I thought if it was a neck problem, then it wouldn’t be possible to without treatment.

 

[Rufous McKinney]

I have many of your symptoms when I am in a flare. F

This illness or whatever just does a real number in terms of generating bizarre inexplicable symptoms. The outside of my right hand is entirely numb. Foot similar. the top of my right hand on the other side itches alot but no rash or anything visible there. I might scream out and leap, when this neurological siezure occurs in my back: like a javalin just landed. Its gone in a few moments. Its just a nerve weirdness. I get "wind" , a chinese term, and its blowing all over the place inside my body. Air has been pouring out of my neck/spine for the last month. Vertebrae pop pop pop over and over. (late in the day, evening symptom). I need more bone broths and roasted vegetables to reduce this wind (tibetan wind diet). I'm going to go get needles for that soon.

This list I could write all day.

 

[Raven Mom]

hi @Lee88 , can't offer anything beyond reinforcing that you be kind to yourself (but this is important, so many of us remain temperamentally over-achievers admirably but verging on disastrously trying to rev our fiery engines under depleted bodies/damaged systems)

it is like an atrocity to see your strength collapsing in weird ways day after day, that's not histrionic. so, what would you do with someone under your care if they witnessed an atrocity + came to you in the middle of the night for your care? bath? tea with honey and some fetal or happy-yoga-baby pose (ie wherever your body comfortably settles + can puddle the nerves to a still point on the floor)? consider calling a distress line if it's in the middle of the night and you don't want to wake a loved one~ the folk there aren't poised just to avert suicide attempts, they recognize that society is a circle of giving and receiving + in those hours they are lucky enough to have a surplus and therefore something to give towards keeping the entire circle/culture in balance. the entire culture includes you...so, try not to bear up totally on your own, even in the night,

I hope for you that saying it 'aloud'/in b+w here may have helped you in a turning-the-corner kind of way~~ towards more surety in the realms of your own strength and/or towards knowing you must ask all those around you for more aids...

 

[Wolfcub]

Dear @Lee88 I really feel for you because this illness seems like that for me too. I have different symptoms to yours, but from day 1, a year ago now, I have had remissions and relapses and I guess have learned to live with them.

My own doctor keeps saying I don't have Lyme. Actually he may be right as I don't even present with all the Lyme things, plus when I first became unwell it wouldn't have made sense re: Tick bites within the incubation period. We'd had a harsh bitter winter.
Plus, if anything I have improved millimiter by millimeter during the course of the year, not worsened. I may be wrong, but I can't imagine untreated Lyme disease to behave like that.
But I still get remissions and relapses and never can feel completely like I did before last March.

However a standard blood test often doesn't show up Lyme. So you may want to discuss this with your doctor?

 

[Lee88]

Dear @Lee88 I really feel for you because this illness seems like that for me too. I have different symptoms to yours, but from day 1, a year ago now, I have had remissions and relapses and I guess have learned to live with them.

My own doctor keeps saying I don't have Lyme. Actually he may be right as I don't even present with all the Lyme things, plus when I first became unwell it wouldn't have made sense re: Tick bites within the incubation period. We'd had a harsh bitter winter.
Plus, if anything I have improved millimiter by millimeter during the course of the year, not worsened. I may be wrong, but I can't imagine untreated Lyme disease to behave like that.
But I still get remissions and relapses and never can feel completely like I did before last March.

However a standard blood test often doesn't show up Lyme. So you may want to discuss this with your doctor?

I wouldn’t have thought I’d have improved at all either, if it was untreated Lyme. I’ve never had the joint pain that’s so common in Lyme either. It’s just the visual snow is such a strange symptom, of which I don’t see mentioned a lot, but when I have it’s been in relation to Lyme or its co infections, as well as eye floaters.

I live in the UK so getting a doctor to take your symptoms seriously is like getting blood from a stone. Psychosomatic is my gps favourite word. He once told me one of his areas of expertise was psychiatry, so you can imagine what he thinks of ME/CFS. He once told me, that people who are adamant it’s a physiological illness don’t want to get better. I felt like punching him.

 

[Wolfcub]

I bet you did @Lee88 !!

If you are seriously suspicious of Lyme, and are getting clear Lyme symptoms it might be worth getting a private blood test.

Yes I know what some NHS doctors can be like. I have a pretty good doc. But there comes a point at which they are stumped....and "psychosomatic" does get whispered as a "have you thought of?" possibility.
It seems like the go-to litter bin for anything that they as yet haven't the science for.

 

[Shoshana]

Hi @Lee88
I mostly just want to say hello, that i care, and that I am sorry you are having these confusing difficulties, with your illness and symptoms, and that you have another doctor who is not wanting to investigate any possible physical causes for you.
And in addition, a doctor who assumes he knows things about others, that he cannot possibly know.

We have many of them in the USA, as well.

In my opinion, a doctor who thinks he already knows everything, when about some things he knows very little, does not want to be educated or to increase his knowledge, in order to either learn more, or to help some of his patients that he has not been able to help.

I wish I had good advice on what you should do, but I don't.

 

[Shoshana]

I did mean for that post of mine to sound understanding and supportive to you, @Lee88

However, I included that reaction of mine, and I also ended my post on wishing, but not having good advice,
therefore my post might have seemed too discouraging.

I am not sure if my understanding and support, came through.

But I DO comprehend the difficulties you are having.
And we definitely hope for some improvements for you!