Tips for dealing with EXTREME muscle tension (EMT), please
After a life-altering flare in 2019, I got extreme - and I mean EXTREME, hard to breathe sometimes, extreme - muscle tension in my torso, from my collar bone, down to the top of my thighs, all the way down my right leg to the tips of my right toes. I also need to use a walker because of this “suit of armour” affecting my balance.
I take 20mg baclofen 2-3 x day to keep the muscle spasms at bay, but it, and nothing else prescribed, has helped with the EMT. Nor has acupuncture, CBD, yoga or massage.
What *has* helped reduce the EMT (but not got totally rid of) is THC tincture and gummies. However, I don’t like the psycho reactive effects of THC, so I rarely take either. But for those 24-72 hours I can breathe easier and move without pain…
I stretch every day, multiple times a day, and have physical therapy once a week utilizing the underwater treadmill.
Does anyone know of anything that may also work?
Thank you all for any suggestions you have. I’m desperate at this point.
I'm so sorry to hear that you're experiencing such extreme pain - especially across such a large area of your body too. It sounds excruciating. Has you doctor referred to it as the MS hug or is it something different?
It certainly sounds like you've explored so many options to address the pain. I'm just sorry to hear that most of the efforts haven't brought the relief that you're craving. I guess, it's nice to know that you have the tinctures and gummies when needed. But I know you said that they have undesirable side effects so you'd love to find something different.
You mentioned that you're going to a physical therapist. Have they offered any suggestions of things that you can do at home that could help? I wonder if they have any exercises, stretches or other resources that could help. I know sometimes, just a simple suggestion like stretch when you're in a warm shower helps to loosen muscles better. I'm not suggesting this is the case for you, but I'm just using it as an example of some of the tips that they can share that we wouldn't think of necessarily but can be helpful.Or what insight has your neurologist recommended? I feel like there should be more options and recommendations for the MS community around this.
In the meantime if this is the MS hug, I would suggest typing "MS hug" into the search bar of this site here and you'll see lots of articles that you may find of interest and help.
And of course, I hope that some other members of our community can chime in here to offer their experience and insights as well!
Thinking of you and glad that you're part of this community.
- Alene, moderatorThank you, Alene. Yes, it is an MS hug, an extreme, long-lasting one. My neurologist is very nice but not an MS specialist. She’s very open to learning though and once I told her this was a hug, she did try to find a pharmaceutical solution, to no avail.
Unfortunately, there’s no exercises or stretches that I don’t already do that physical therapy can recommend. Also, I think in the past four and half years I’ve read every article about MS hugs LOL.
since I know there’s the one thing that does work, I’m hoping a fellow MSer knows of something - no matter how obscure - that may give me the same relief with the side-effects.
Thank you for being here, Alene, and for hearing me.
Blessings
Karenthanks for your note, and I'm glad to hear that if nothing else the sense of community is helpful to have. That's what this place is all about after all! It sounds like you've certainly covered all your bases over the past several years. That's true commitment and determination. I certainly hope that you get some fresh ideas and recommendations from this community as well!
- Alene, moderatorit is so disheartening to know the costs of being sick and the fact that money can stand in the way of someone's treatment. I'm sorry to hear that you've gone through such a hard time with all of this. I hope that some unforeseen miracles on headed your way soon!
Alene, moderator
Karen, I understand and literally feel your pain. I take 7, 10mg of baclofen everyday. My husband helps me stretch once a day in the evening before bed. I have pain everyday in my left hamstring and left arm and hand. Nothing helps. Pain Management suggested a baclofen pump. I talked to one person who said it helped her. She has had the pump for 12 years. I just don’t know if I’m ready for that. Of course that is the only person I talked to about the pump. I find your use of THC interesting. I have been considering it. I understand the side effects, just not sure about it either. I’d rather try THC than the pump. I just wanted to respond to your post, so you know at least one person heard you. Good Luck! April
thank you for hearing me. I don’t like to bother my fellow MSers with my travails as we all have problems, but this one … oh, it’s horrific. I’m at my wits end. I’ll keep researching and if I come across anything, I’ll share it on here.
I’m not sure how a baclofen pump would help since baclofen orally, while stopping the spasms, does nothing to relieve the EMT. I’ll need to research that.
All the very, very best to April59 ♥️. Please take care and be well, happy and safe.
Karenthank you. Yes, knowing you’re not alone, and someone has heard you, means so much.
Thank you for all you do for the community, Erin.
Please take care and be well, happy and safe.
All good things to you
Karen
