ActiveMSers Forums  

Go Back   ActiveMSers Forums > ActiveMSers.org Forums > General

Reply
 
Thread Tools Display Modes
  #11  
Old 12-21-2016, 10:13 PM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

Thank you nabbosa for your comments. Iím looking into some of the therapies you mentioned. Iím wondering how often you go to a massage therapist and which of the three therapies were beneficial or was it the combo of all three? Also, so you donít find that it only helps a bit, or temporarily as SueBee and I discussed? Wonky Connections indeed!
Thanks Fat Paul.
Reply With Quote
  #12  
Old 12-28-2016, 02:16 AM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

Also, noteworthy on the subject of ďnot having any acute attacks in the past few yearsĒ. Beside doing Yoga and other stretches, I have not sat in my recliner. My recliner sits with my back arched slightly forward. That is ok for a while however, for long periods this increases the size of my Python. A few of my cute attacks happened after falling asleep in my recliner. After spending hours slightly hunched forward, when I would go to sit up and get out of the chair is when the attack would happen.
Reply With Quote
  #13  
Old 12-29-2016, 03:17 AM
nabbosa nabbosa is offline
Junior Optimistic Misfit
 
Join Date: Aug 2011
Location: Chicago
Posts: 5
Default Massage for MS Hug

The therapist used different modalities depending on what she thought was going on with my body that day. She also dealt with non-MS stuff.
I went either every other week or every third week, as I could afford it at the time. I've moved now, and haven't found a new therapist yet. But I also only notice it for the non-MS stuff.
I seem to remember there being websites where you could look up therapists in your area who are trained in some of these methods. Can't remember which ones, though.
Reply With Quote
  #14  
Old 12-29-2016, 09:35 PM
Fit Paul Fit Paul is offline
Senior Misfit
 
Join Date: Jul 2011
Posts: 133
Default

I need to try yoga, if I could kick big pharmaceutical to the curb I would be happy.
Reply With Quote
  #15  
Old 01-15-2017, 02:23 PM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

Paul, that’s great that you don’t drive impaired. So, in the morning are you still getting some benefit from the Indica that you can wait until the afternoon?
Reply With Quote
  #16  
Old 01-15-2017, 02:49 PM
Suebee Suebee is offline
MS Whisperer
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 447
Default

Funny, I thought and still not convinced that my liver or other organ isn't pushing my abdomen up into my ribs!
I've been to so called best PT and neuros and spinal neuro. No one has diagnosed my pain and pressure as a result of spasticity or hug. But I didn't push them to do it. I find advocating strongly sometimes backfires and I'm a little demoralized by it. I think that drs are ok with deciding certain symptoms are unexplained and could or could not be caused by MS. The problem with this obviously is that without a specific accurate diagnosis for the "hug" it is less likely one is going to have it managed it well.

Yes, my hug is debilitating in several ways - severe hug makes me recline or sit reclined or get on floor. I consciously need to not let the sensation panic me while I do my daily tasks. I get fatigued in core and sometimes need to stop everything and rest my core (kinda like Dave's kayak story) and this can be awkward and hard for those around me to understand that when I was walking (or kayaking) fine just a min ago.

I also have self diagnosed myself with lordosis, a curvature of the lower spine that can occur when someone has a muscular weakness from CNS damage. I am not old per se but lost 2 full inches in height since my significant attack 10 years ago. I have a baseball size deep curve in my spine at its base. A symptom of lordosis is weak and painful hips because the odd rotation of the hips with curve. It does not appear that lordosis is studied in mobile MS patients but instead the paralyzed, stroke victim, or cerebral palsy. Spinal orthos who specialize in scoliosis (curvature of the spine) treat children (who are growing and the spine can be guided) and bed bound or severely disabled adults that require spinal fusion/surgery. I have not been successful in finding the right medical person to help me. I just want targeted exercises to strengthen the specific muscles that support the spine and core, and a girdle or brace of some sort to prevent further curve. I currently use a fashion highly reinforced girdle on some days and it provides much needed support.
Sorry, I might have got a bit off topic, but in my mind my back and hug issues are related - caused by weak muscles and misfiring neurons.
Any suggestions welcome....
Reply With Quote
  #17  
Old 01-15-2017, 02:54 PM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

I know I cannot do my running, or anything else without something. Oct 15í My wife and I switched insurance to an HMO. Had to change Dr.ís & pharmacies too! November comes and Iím low on Lyrica, HMO wouldnít approve, & I donít see new Neuo till December. I ran out, (I did titrate down some before.) I was so miserable. Basically, home bound for a few weeks. Family Dr. prescribed a starting dose of Neurontin. That was just enough to keep me from hating to be alive.
Once I got to the neuro he said Iíll give you a real dose of Neurontin. I went through hell for several months. I eventually maxed out on Neurontin & didnít feel as good as when I was on Lyrica. I tried to get Lyrica again, insurance denied. I wrote them a letter and they approved. It was a rough time switching back.
Iím back on Lyrica and maxed out. I still didnít think I feel as good as when I was first on this. Did I progress, is it not as effective, I donít know.
Paul, when I first started looking at yoga, I got the free MS yoga DVD, one of the drug companies made, it sucked. Had me huffing and puffing. Then a fellow MSer gave me a yoga for seniorís DVD. It was actually pretty good. They had three people, doing three different levels of the poses. That might be an idea for you to get started. Iím very lucky that I have a great yoga instructor. She actually made a class for us, MS/Chair yoga. Now weíve opened it up to anyone. Been going three years now.
Reply With Quote
  #18  
Old 01-15-2017, 04:41 PM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

Suebee, I didnít see you had posted before my last post. I can certainly relate to your description of how the hug is debilitating. I have a hard time standing up straight when itís bad. I will come in the house, from the shed, and walk bent over at the waist. Iíll stop, force my body upright, then bend over backwards to stretch my abdomen, then try to continue. As I walk the rest of the way my body goes right back forward.
I think the Hug and weak back muscles go together too. Like Daveís kayak story, the core is just weak. Iíd like to know why.
Reply With Quote
  #19  
Old 01-15-2017, 06:33 PM
Suebee Suebee is offline
MS Whisperer
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 447
Default Lordosis (over cure of lower spine due to weak muscles) specific exercises

here is a link to healthline's suggested exercises for lordosis. There are 5 exercises and they are glibly described. Some may be more advanced than your body allows. They are similar to ones I was prescribed at PT, but I have not strengthened. I post because I thought you all might be interested to know how the core, back, and hip muscles are inter-related for strengthening.
http://www.healthline.com/health/fit...is-exercises#2

The take away--"Lordosis is often due to an imbalance between the muscles surrounding the pelvic bones. Weak muscles used to lift the leg forward (hip flexors) combined with tight muscles used to arch the back (back extensors), can cause an increased pelvic tilt, limiting movement of the lower back.

One case study found that strengthening the glutes, hamstrings, and abdominal muscles can assist in pulling the pelvis into proper alignment, improving lordosis. This can help decrease pain, increase function, and improve ability to do everyday activities with ease."

Last edited by Suebee; 01-15-2017 at 06:35 PM. Reason: Added takeaway so MSers could see how it might relate to them
Reply With Quote
  #20  
Old 01-26-2017, 12:57 PM
Rob Rob is offline
Optimistic Misfit
 
Join Date: Jan 2015
Location: Michigan
Posts: 22
Default

Thanks. How debilitating was the Hug for you?
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 11:46 AM.


Powered by vBulletin® Version 3.7.0
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
ActiveMSers