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Walking getting harder...

Messages
14
I used to suffer from ME-induced muscle aches (focused in the front thigh muscles), which made walking a chore. LDN blocked those aches completely. The day after my first dose, I went for what I expected would be a short walk, and found my legs feeling fine, so I continued, up a steep hill, across a km or so, then back. A dramatic improvement. LDN doesn't work for everyone, but I'm glad I tried it. The aches gradually fades, so I no longer need LDN.

I did try acupuncture once, and it blocked the aches as well as LDN did. The effect lasted a couple of days. LDN was cheaper.

BTW, I think my aches were perceptual, rather than physical, caused by neurons misfiring due to ME changes.
Sorry I don't know what LDN is? My issue on top of muscle fatigue is like a semi paralysis.. Left side only... But affects whole arm and whole leg. Its like a complete weakness. Would whatever LDN is help with that?
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
LDN is low-dosage naltrexone. There are some threads on it elsewhere here on PR. I'm not sure if it would help with the semi paralysis. I did find it remarkably effective for my perceived muscle aches. One nice thing about LDN is that it's such a low dosage that doctors aren't hesitant about writing a prescription for it. Regular pharmacists don't handle it, so you need a compounding pharmacist.

Search for LDN here, read some of the threads, and you can decide whether it's worth trying.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sorry I don't know what LDN is? My issue on top of muscle fatigue is like a semi paralysis.. Left side only... But affects whole arm and whole leg. Its like a complete weakness. Would whatever LDN is help with that?

The left sided semi paralyses symptoms have always fascinated me as Ive found about 80% of us have this on our left side only. It used to cause me horrible foot drag on that one to the point I used to then trip due to my foot not working properly as I walked.

I too dont know of anyone here who has used LDN for that symptom. In fact I dont know of anything which has helped that symptom in ME people.
 
Messages
14
In fact I dont know of anything which has helped that symptom in ME people.

Ive been in the stroke ward for a few days for the left side paralysis. No clue there either. No test shows anything at all... Which is when they said it was conversion disorder. Happens to some extent daily... Worst of all my symptoms x
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Which is when they said it was conversion disorder.

I don't know why medicine needs more funding for research and development of more drugs and treatments and advancements in any kind of medical equipment if they keep insisting they know it all and have everything already figured out so much so that they can run their little tests and then look the truly suffering patient in the eyes and declare with 100% certainty that is is all up in our heads. :bang-head::bang-head::bang-head::bang-head::bang-head:

Sorry for the rant but I am so tired of that. It is not conversion disorder. It is lazy, uncaring doctor disorder.

I'm so sorry you were treated that way. :( I hope you press on and pursue getting a real diagnosis from a real doctor not these pseudo-type doctors because there is something wrong with how your body (not your mind) is working. :(

Thanks all, budget just can't stretch to a car

I understand completely. I worry about money all the time because I can see unavoidable expenses coming up but don't know where we are going to get the funds to cover them.

I don't know if this would help but we have a local faith caregiver agency that provides free volunteer rides for elderly, and I think disabled. Could you see if there are any in your community like that? We were discussing getting rid of our car because of the cost of repairs and monthly insurance premium and I saw that.

Plus, I have state insurance that offers me free rides to doctors appointments, if I ask. You could see if your insurance has anything like that maybe. (These aren't always the most expedient way to get anywhere though. For instance we met a lady going into my mom's respiratory therapy while she was waiting for her ride and she was still there waiting when we came out 1-1/2 hours later. :grumpy: They finally pulled up as we were loading my mom into our vehicle otherwise we were going to see if there would be a way for us to take her home.)

I put this idea last because I'm kinda leary of the safety of it and there is still the expense but could you look into something like Lyft or Uber if you have them there? Just once in a while for those trips that are 3 bus rides away. (I've used the bus service with ME/CFS so I know how it can multiply our fatigue exponentially.)

I really, really hope and am praying that you get some help so you don't have to go it alone (and with 2 young children to look after too). :vomit:

Edit: If all else fails, please consider something like a walker. My mom's walker has a seat so she can rest when she needs to and a basket so I don't have to carry all her things and we also hang some of her oxygen tanks on the handles. It's very nice and though I'm 51, I would use one myself and am seriously considering it. (The only thing stopping me really is that I like to walk behind her if she stumbles [even with the walker this happens] and I can't reach her very well if I'm using one too.)

Edit #2: I rethought this a bit and I am wondering though if a walker would be difficult for you to maneuver onto a bus especially with the added basket, etc. :(
 
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rel8ted

Senior Member
Messages
451
Location
Usa
conversion disorder
I want wikipedia update to define conversion disorder as "the diagnosis given by baffled doctors who have run out of time and energy to diagnose complex illnesses in zebra patients, usually resulting in moderate to severe disability." Anybody want to make that edit?