MS Hug?

[joys-an21]

Hi Y'all! I hope everyone is having a good Saturday night. For the last couple weeks I have had what I think could be the hug, but I'm not sure. For the most part I'm OK when I'm at rest, but when I'm on my feet for a while it feels like my entire upper body sinks into my waist and is too heavy to carry. Sitting down for a while, especially if I can put my feet up, helps. But when I get back up it isn't long before it begins again. Is this the hug everyone talks about, or something else entirely??

[Raingrrl]

When I experienced the MS Hug, it felt more like an oversized rubber band was wrapped tightly around my ribcage making it hard to take a deep breath. Like a hug that is too tight. I've not heard it described as you have but that doesn't mean anything since MS can be so variable from person to person.

[joys-an21 in reply to Raingrrl]

Thanks Raingrrl. I have had the tight "hug" you described too. This thing is new and it really bugs me. It's like I get weighed down to the point I can't stand without support of some kind. But, as you said, with MS anything goes. Thanks again.

[erash in reply to Raingrrl]

Raingrrl that was more like what I experienced. It was like I just couldn't expand my chest enuf to get a good inhale. But I have read all different descriptions joys-an21

[Iona60]

joys-an21 I've had the same thing as Raingrrl described.

[joys-an21]

Thanks Lois52 for your reply. I know just what you mean about trying to strengthen core muscles....and not seeing improvement. And I know I have a lot to do there. As much as I hate it when I hear it, it's true that as we age those things can become higher hurdles to jump. And throw in MS and we have a real challenge sometime. I've been trying to do some chair exercises soon after waking in the morning and that at least gets me more motivated to try to get up and get a few things done. Thanks again, it was nice hearing from you.

[erash in reply to joys-an21]

joys-an21 👍Keep up the exercises!!!

[GasLight]

Hi, joys-an21 . Great post, by the way.

I've had this same condition for some time, and you describe it very well. I had not been aware of it initially, though.

I was visiting with an OT who deals a good bit with PPMS about 3 months ago. She stopped me 5-10 minutes into our discussion, and asked if I were aware that I slumped over pretty severely (I was not). Her personal term for this behavior was "imploding," and (as starlight5 also has suggested) the OT proceeded to explain that it was a function of my losing ability to hold up my own core (I have PPMS, and she described it all as a new phase in my progression).

--Christopher

[joys-an21 in reply to GasLight]

Hi, Christopher! Imploding! Perfect term for it. When it is at its worst I'm glad I have kind of broad shoulders so I know I can't sink all the way into myself. Wow! Isn't MS a fascinating disease? I'd kind of rather study it from a little bit farther away, but the one thing I know for certain is the most consistent thing about MS is there is nothing consistent about it.

[Jesmcd2 CommunityAmbassador in reply to joys-an21]

joys-an21 l had to stop and share the laugh with you! I was taking a great interest in this post when all of a sudden, you come out with, it's a fascinating disease, but rather study it farther away.😅😅. Me to!😅🌠

[Fancy1959]

joy-an21, it's Fancy1959. it's good to talk to you again. i've never had the MS hug but the way i heard it described was exactly what Raingrrl, Lois52, and Lona60 described. The best posible thing to do is to keep track of your symptoms and check with your neurologist about them. remember we aren't docors to diagnose your new issues, we simply share stories about what we have exprienced. i have had something very similar to what you described. i've always thought of it as part of my MS fatigue when i over due it. it gets so bad i can't lift my arms to even part my hair. The whole upper body just stops working. Then my legs follow shortly behind. The recovery time is just like you said, sitting back in a recliner with your feet up revives your muscles in 15 to 20 minutes. But if you get up and push it too hard again, the fatigue hits quicke the 2nd time and lasts longer. i hope these help.

Take care of yourself. Learn your new MS limits and don't overdue it. We are only a post away if you need us. Remember, together we are stronger!

[GasLight]

Hi starlight5 . She admonished me to get with a neurologist as soon as practicable (I did not have a relationship with a local neuro at that time), and she also advised that the extreme slumping process could depress my heart/lung function, ultimately starving my tissue of nutrition (and leading to muscle tissue necrosis). At that time, my calves and other key muscle groups had already begun to waste away dramatically, and in the span of just the prior year, I had gone from being pretty well-defined, to having a body type more typically seen in an octogenarian. I can't speculate, however, whether a loss of core strength and a related slump were the cause of all that, or not.

The OT also suggested that I would likely soon need a complex rehab wheelchair, the tilt and recline functions of which would enable me to relieve the slump effect (by tipping my body much like an hourglass). At the time that we were speaking, I was still using a walker, but had become very unstable using it, and was often having to drag my lower body along (using my torso).

Subsequent providers concurred with her general assessment, and I am now in a loaner power chair, awaiting approval and processing of the tilt/recline complex rehab wheelchair.

Because I'm at a 1/5 on lower body function and presently in a chair, we have not yet spoken too much about exercises. They are, however, trying to get me into an SAR program as we speak.

As a side note, I've also seen some really interesting stuff on both neuroplasticity and electrical stimulation. As Lord allows, I'll try and post some informational resources on these subjects, as well as my own prior experience with healthcare providers on the topic (the latter, of course, being just that-- merely my own personal experiences, in a search that remains ongoing).

-- Christopher

[Hidden]

joys-an21 I have had what you are referring to, but it is not the hug. I suffer severely from the "hug" I also suffer from what you are describing. I feel like i am about 100 years old. Don't know what it is other than sheer exhaustion. I suffer from SPMS. but have had that symptom. I hunch over when walking and sitting. Other times, it goes away. I guess when I am less exhausted. Less so since I haven't ben working. I am also on like 4 different muscle relaxers and other type meds. However if I have a busy day, It comes back for a few days.. Sorry rambling. But like someone said, non of us are Drs.

[jimeka]

Hi Joy-an21, I get the feeling that I cannot get a deep breath and I have to literally bend over with my hands on my knees to get air into my lungs. I feel tight around my rib cage and I don't feel as though I am filling my lungs properly. I have had this symptom at least 20 years, even been to a respiratory specialist but this was before I was dx as having ms. They could find nothing wrong with me, then they tried to tell me I had COPD which again after having all the tests proved negative, someone actually mentioned the ms hug. Blessings Jimeka

[erash]

starlight5 perhaps no visible improvement but I always wonder if I wasn't doing XYZ would I have had further decline?

[Hidden]

MS is merciless and the opposite of how I was raised in my physical exercise. I was a trained gymnast and dancer and would work through fatigue and build muscle, the more I did the stronger I would get - BUT put MS into the equation, and it is my personal experience that 'the more I do the less I can do'. They call it the law of diminishing returns (sadly). I remember the Neuros testing me and telling me how strong I was, yadda yadda but then I would ask them to test me the 2nd or 3rd time and they would then see I wasn't just weaker, I had NOTHING left as far as strength. Fatigue is a huge factor with MS as you all know. The MS Hug for me is the wrapping sensation (originally a thin elastic tightening which is now my entire torso). I believe (I am not a doctor but let me say this- we all KNOW that we are NOT doctors and these are our personal experiences) that my intercostals (muscles between your ribs) are in spasm. This 'hunching' (I have it, too) we are talking about must involve the back muscles no longer receiving the correct messages. I have lost my ability to raise my chest up after bending too far forward -d*mn I hate this disease! I have not found any exercises that build my muscles in an area during a relapse so I exercise like h*ll when I am 'better'.

[BeezyB in reply to Hidden]

Curious if you get the Banding but don't feel like you can't breathe? My upper chest bands very tight yet I don't feel like I can't breathe. Most seem to indicate breathing effected but thru years of hugs never short breathe?

[Hidden]

I didn't use to get the breathing involvement. I do know that the longer the chest (for me) is in spasm, fatigue sets in and then I feel the panic mode-which might explain the breathing. I sometimes use the 'panic' approach, i.e. breathing into a bag as the tightness causes me to do panting breathing (I don't even know I am doing it until I get a strange feeling) which actually, I am told, causes me to get too much oxygen. Does that make sense to you, hope so.