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Hi,
Does anyone struggle with severe pain and stiffness in their throat?

I’ve had intense pain in throat area for more than 2 years. It’s a stiff cramping pain and it’s relentless! Is it spasticity gone amok?

I’m more than 4 years in, classified as UMN syndrome. Pain, spasticity, difficulty walking, abnormal postures (arms glued to body, hand closed, lean forward at waist…) weakness legs/arms, hyperreflexia, clonus, muscle spasms and cramps. Exhaustive medical tests. There was a time when doctors would suspect cervical stenosis or nerve or cord compression due to pain when moving arm or shoulder, inability to stand on heels, neck pain etc. As a result, I’ve had many MRI’s of my neck. I’m pretty certain this severe chronic pain in throat is not something else.

I have significant pain in many other areas but this pain in throat is the most debilitating. My condition was leg onset and I thankfully don’t have speech problems. I take high dose of baclofen and opana (a long acting opiod for pain). I’ve tried dozens of treatments for pain.

I guess people with PLS and UMN syndrome have pain and spasticity in many areas of their body. I’ve just never heard of pain/stiffness in throat. I can’t bear it.

Does anyone experience this? Thanks.
 
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Spasticity in the throat causes noticeable voice problems - dysphonia, hoarseness, loss of volume, monotone. If you have had this for two years and none of that, then you should go looking for a cause. Have you gone to an ENT? They are pretty good at figuring out what's going on, and if they think it is neurological they'll send you to a neurologist with useful information to give him.

It can be hard when you have incurable neuro problems, like most UMN things, to remember that new symptoms don't have to be that, having a UMN problem doesn't make us immune to other things.
 
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Thanks Tok,
Yes, I have loss of volume, hoarseness and monotone at times but no slurring (or very rarely if i'm very tired or stressed out ) or other difficulty speaking. i've seen ENT, neurosurgeon, endocrinologist re throat pain/stiffness and been cleared. my neurologist is unsure if the pain in throat area is related to my other umn issues. it wouldn't matter except it's agonizing pain.
i've had a hard time with pain meds (for pain in throat and elsewhere). they either do nothing or little even very powerful meds or with a few i've had very adverse reactions.
my latest strategy with throat pain was upping baclofen thinking maybe due to spasticity but that hasn't helped.
sorry to complain. i've read many posts here and realize many people have far more advanced and serious symptoms. if i could only find a way to manage or cope with this damn pain. oh well.
wishing all a good day.
 
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Bluesea-

Your pain sounds dreadful- so sorry you can't get comfortable. At the risk of being redundant- have you tried heat? I get severe spams/cramps or whatever you want to call it- and it hurts so much, that it brings tears- my heating pad helps. In terms of meds- I take Neurontin (Gabapentin) on an as needed basis- and it really helps. I've only had to take it a few times- but grateful for the help. While it doesn't eliminate the pain - it sure does make it tolerable. ( but does make me dopey!)
 
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Does it feel better if you don't talk for a while (ie, a day or more)?
 
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ottawa girl,
neurotin is a really good suggestion. thanks. i've tried it twice. you name it i've tried it. i'd guess more than 25 different treatments for pain. i don't use heat but ice. it seems that people with pain like one or the other. i used to use ice for pain in legs and neck/throat. i don't really bother anymore. my ideal would be to have an ice pack inside my neck wrapped around throat bronchial tube. ah now that would be nice.
because everything's been eliminated my intuition tells me the cramping rigid pain in throat is related to umn. i'm classic with other symptoms. this may just be unusual presentation? however, i could be wrong.
tok, that's a good question. not really. for the most part no difference in pain level if i don't speak. there have been times when it's difficult to speak, very low volume and i don't but overall pain isn't lessened by shutting up. when this pain first started several years ago it was so profound i was sure i was going to lose ability to speak.
thanks guys, it helps to talk to folks that get it. i appreciate yr input.
 
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Man, that sucks. I'm sorry. I've had that painful throat spasticity, but for me it died down if I strictly used a machine to talk for a few days.
 
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Hi Bluesea

I'm not sure I can offer much advice, but I wanted to say you are not alone. I was going crazy with throat pain last night when I logged on and read your post. I loved your suggestion about wrapping ice around the INSIDE of your throat. That sounds perfect!

I'm perhaps in a slightly better position than you, with mine almost definitely (most of the time) relating to occasions when I speak a lot. Otherwise it occurs at exactly the same time as when I have oesophageal spasms and general swallowing difficulties. Yesterday I had a big debate/argument with my sister about politics. (It was fun, we like debating!) But afterwards, I felt like a small knife was twisting in my throat. It was so painful! This morning the pain is a little diminished and I am hoarse, my voice is quiet and I'm having difficulty with saliva.

I find Neurontin works a little bit, but not much. I'm sure what I am experiencing is spasticity in my throat. It feels very similar to spasticity in my thigh.

Anyway, I just wanted to let you know that you are not alone.

Cheers
Lilly

I have the abnormal arm/hand posturing too. My neuro says it is dystonia.
 
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hi Lilly,
i'm sorry you struggle with throat pain too. thanks for sharing yr experience. it does help to know that others may have similar issue as docs are perplexed by this particular symptom. my other issues take a real toll but i can manage but this gnawing throat ache turns me into a monster. the neurotin helped as did fentanyl and methadone but i had intolerable side effects. wish i could find a non narcotic med or better yet a magic wand.
i'm with you. i think my throat/inside my neck pain is or could be spasticity. i may ask my neurologist to try another muscle relaxer.
given the consequences, i hope u won the debate with your sister.
thanks again!
 
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I'm sorry to hear about your throat pain. You are not alone. I have bouts of extreme spasms in my throat that are real painful. However, I can't speak at all. I use a iPad with a speech app to communicate. My throat is hard to the touch on the outside due to extreme spasticity. I was just diagnosed PLS recently after two years of looking for a neuro to take me serious. He's about to try me on a new med to hopefully improve spasticity and improve my walking and speech called zanaflex. I had a bad reaction to baclofen. If that don't work he said probably Botox shots. I hope u get some relief soon.
 
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