Please help! Basic, gentle, stretching program? I'm afraid.

[Maggie2015]

Hi, it’s Maggie again.

I just posted about being diagnosed with myofascial pain syndrome as the cause of the chronic and debilitating pain in my back.

As part of the bad thing that happened to me, I can’t follow up on the line of treatment the specialist I saw recommended because my new health insurance plan is not approving the aquatic PT, or PT at all, and I can’t afford to pay—it’s $196.00 a session!

My doctor (the specialist who diagnosed me) knows this and he is trying to help me fight the bureaucratic red tape that is preventing me from getting the care I need. In this way, I think he is the kind of care provider all of us need and deserve—he LISTENS, and he takes into account the WHOLE person and his or her particular manifestation of disease or disability, and not only that, he considers each patient’s extenuating circumstances (not as a way to say—see, the stress you’re under makes all this “in your head,” but as a way to help). He advocates for his patients so that they can get the best care.

But I need to stop making a speech and ask for help!!!

In the meantime, he recommended I start doing stretches at home, but he did not offer advice as to where to begin.

I got a yoga mat and I tried to do yoga, but it HURTS.

I am basically still in acute pain, and I am in a perpetual state of being “crunched and hunched” over in my back. I walk with an “antalgic gait,” which my new neurologist just noted.

Long ago, I think to you, I called it “the herky jerky”—my legs are so stiff and my pain is so severe that I each step is measured and my whole body sort of jerks along with it, with my arms held out to the sides, also stiffly.

I need to know if any of you can recommend a basic stretching program for a person in PAIN, someone who doesn’t remember what it’s like to be able to touch her toes or stand up straight without being medicated and with a battery operated tens unit attached to her back.
I tried googling “stretching exercises,” etc., but all seemed to be designed for people who want to be fit.

It’s not that I DON’T want to be fit—I do. But these are for pre work-out and post-work out able-bodied people, and even looking at them “ouch me,” as again, my daughter would say.

And deep down, I’m scared to move my hunched and crunched body without someone who knows MS and PAIN to guide me.

It’s not just physical hurt, it’s psychological hurt. I hurt at all I’ve lost and I’ve lost it at the same time the pain has mounted. I feel like if I could do stretches on my yoga mat that you’ve recommended, I’d feel safer.

Please help if you can.

Thank you so much,

Maggie

[Seasha]

Hi Maggie! I'm sorry you are in so much pain

I take a gentle yoga class which helps me stay somewhat flexible and somewhat more stable on standing. Can you find a gentle yoga class in your area? Sometimes the class is designed for seniors (like me) in which the poses are much more gentle and movements are slower.

I found this online which might be helpful while using a yoga mat. (in my class we use blankets to lie on for more cushioning.) This link shows poses for strengthening the back- http://life.gaiam.com/article/how-st...your-back-yoga

Another site from the NMSS gives recommendations for the whole body- http://www.nationalmssociety.org/Nat...ted-Manual.pdf

You can look up more by using the words in a goggle search "stretches for MS patients" or you can always look this up in YouTube to see videos. There are also site for sitting exercises for MS patients.

Whatever stretches you do, remember to go slow and if it increases your pain level, ease up or simply don't do them. Drink plenty of water before and afterwards.

Hope this helps you and you can ease up the pain!

[TaoWarrior]

Try looking up seated workout. I find those to be helpful while low impact once you learn the movements and how they make your muscles feel you can modify them to be more effective. Also once you learn how certain stretches work certain muscle groups you can design your own standing exercises that work the muscles you need it in.

[Tia1]

Sending a BIG, soft (hug)

I know how you feel!

I would do the smallest amount of stretching. Like bending your muscle in any direction and holding it for just a few seconds at a time.

When you have the degree of pain and stiffness that you describe, you could really hurt yourself trying to push pass the pain.

Have you seen a rheumatologist? Maybe, going to a different specialist will give you a different way to treat. The insurance company gives different tools to different doctors and you obviously need PT. Are you taking any inflammatory medications that may help you get moving or tat least alleviate some of the pain before and after, so that you can keep going?

One doctor won't have all of the answers when you have multiple systems involved. Pt is routine for some doctors to order and insurance won't think twice about doing it coming from the right doctor.

It's why a primary care doctor won't get approved for an mri, but a specialist will have it done as a routine part of his treatment.

Please see someone that can help you. It may not be something that your neurologist can fix.

I will be thinking of you and just said a prayer for you. I understand your fear of making things worse and without doing it the right way, you may very well do that.

Take it slow!!!

[Maggie2015]

thank you--I was feeling like such a LOSER!

Hi, it's Maggie. You just helped me so much. I felt like such a LOSER because my doctor (he's a physical medicine and rehabilitation specialist who works with patients who have MS, ALS, and Parkinson's) had said to start alone at home when I saw him on January 4 and told him my insurance wasn't approving the PT.

That was almost a month ago . And I promised myself and my boyfriend that I would DO IT, no matter how scared I was and how much it hurt, because my doctor said that the trigger point injections wouldn't go far in helping me GET BETTER if I wasn't stretching the affected muscles, too!

TaoWarrior, I really like the idea of trying out different exercises and seeing how they feel and especially, as you said, eventually designing my own routine that works for me. Thank you.

Seasha,thank you for being so sympathetic and for the links--they look POSSIBLE. I bookmarked them on my computer and I am going to take a look and try them out.

Tia1, thank you for your big soft hug and for sending me a prayer. And thank you for the advice about the doctor. As far as I know, this specialist IS qualified to order the PT because he's a rehabilitation specialist. It's my insurance--I had to switch to a new plan--and once I did everything, to be blunt, went down the toilet.

They deny everything once or twice, including the meds I've been on for years, and the whole process of fighting them (my doctors are helping me) has taken at worst up to a month and a half. The second aquatic PT denial just happened last week, and my doctor is going to get something called a "peer-to peer" review with the a doctor from the insurance company, so I have to wait.

And Seasha and Tia1, thank you for validating my fear that I could hurt myself, and telling me it is OK to go slow and be careful and stop when I need to stop.

I was feeling, as I said, like a LOSER, like I didn't even WANT to help myself, because when I did try I was shaking in pain and from weakness, and then I would start to cry because it hurt, and also because of my own emotional baggage:

I've had MS for six years now and before my 2013 relapse, I could walk 2 miles in a half an hour and jog a quarter mile and hold the tree pose in yoga for 3 minutes. I am not trying to brag. It's just that before I was diagnosed, I really hated exercise and didn't bother with it, and once I was diagnosed, I motivated myself to take action and stay fit, and now not only can I barely hobble around, but I can't find that internal motivation. It's like there's a dark hole where that was.

And so I was telling myself, MAGGIE, FOR HEAVEN'S SAKE, IF YOU CAN'T DO IT FOR YOU DO IT FOR YOUR DAUGHTER AND YOUR BOYFRIEND--DON'T YOU LOVE THEM ENOUGH TO TRY TO GET BETTER?

And every day I felt more and more guilty.

Oh, I didn't mean to vent. I'm sorry. What's important is that now I don't feel so alone, because you've told me it's OK to be afraid, and given me a place to start.

Thank you again, so much.

Maggie

[Seasha]

Hi Maggie - please don't apologize about venting - OK? We all do it and this is a safe haven in which to vent, cry, or laugh and be downright miserable. We all get it!

I'm glad your doctor is advocating for you about getting what you need. That's invaluable!

One thing that has always motivated me to get exercise of any kind is to have a chart and mark down the minutes I spend doing it. Once I reach certain marks, I treat myself to something - a latte, a new top, whatever! I need this as I am not very active anymore and it gets harder to do things (I'm Secondary progressive). Because of this, I've learned to adapt to so much - including exercising.

I hope you can appeal again and again, if needed, and get the help you need. I know you want to do this for your daughter and boyfriend, but you left out the most important equation - YOU! Love yourself too

[hunterd]

Maggie,
are you currently taking any thing to control your spasticity? Is that even a problem for you? Talk to your neurologist regarding this issue. Keep us up to date. Please.

[Maggie2015]

Baclofen and Clonazepam for Spasticity--and thank you for letting me vent!

Hi, it's Maggie!

Seasha, thank you for telling me it's OK to vent. It surprised me when I did all of a sudden, but it is a relief and it's such a help to be able to do it here. And also for reminding me I am important, too. I am struggling with a feeling of low self-worth, so I try to think of others rather than me. I need to work on that.

And hunterd, my neurologist has me on 20 mg of Baclofen 3 tx daily for spasticity, and then at night I take 2 mg Clonazepam.

The increase in Baclofen helped for 3 months when my back pain started, and I'm sure it's helping now--I just don't recognize it any more.

My back pain (the myofascial pain syndrome part) has gotten worse and worse (it started in January 2015), and it's plateaued at a 7 to 8 out of 10 on the pain scale most days. Right now it's like someone has stabbed me with a knife--and it's still stuck there-- in a spot in what I now know from my physical medicine and rehabilitation specialist is at a "trigger point" in my left lumbar paraspinal muscles.

When I get trigger point injections in the places he's identified, my pain lifts for 48 hours or so, starting out at about a 3 out of 10, and then it gradually comes back. So far I've only been able to get them once a month (my insurance hasn't approved them weekly).

Clonazepam is the only med I've taken that relieves the myofascial pain syndrome. But it knocks me out within 45 minutes at most, so I savor the relief as long as I can before I go to sleep (and I'm very lucky to be able to sleep).

So far no word from the PT if the insurance has approved it. I'm going to call again on Monday.

Thank you so much for caring.

Maggie

[hunterd]

if there is a pool therapy available to you, I cannot stress enough giving it a try. I should have thought of this before.

[Maggie2015]

pool therapy--yes! Fingers crossed!

hunterd, YES! My rehabilitation specialist prescribed once a week trigger point injections and 3 tx a week aquatic physical therapy for 3 months, moving then to "on the ground PT" once I've gained more strength and flexibility and my pain is at a manageable level.

I'm waiting to get both approved. I'm calling tomorrow (Monday) to check again. Fingers crossed.

Thank you so much.

Maggie

PS. I posted in bps25631's thread about having to limit shopping trips, social gatherings, etc. I should say that since the myofascial pain grew to a 7 or 8 on the pain scale of 10, I wouldn't be able to do any of those things without my tens unit . I get the 4 electrodes on my back in a square and I put a 9V battery in and hook it to the inside of my pants. I start out with it set at about a 20 and as the hours go by I have to increase it til up to 40. And I keep spare 9V batteries in my purse. It helps the pain--I don't know if it only masks it--but I can stand up straight with it, and I don't double over and moan (neither of which are good for shopping or for being a fun party guest).

[kelm10]

a couple of more things.

This definitely is the place to vent and cheer.

As a "water babe", I could live in the water. And, being in the water has kept me sane from pain. And, I would probably be hunched over like you, if I was not in the pool as often as I am.

First:

Aquatic Therapy pools are heated and have to be used cautiously with MS patients. It might be just right to be able to relax them muscles that you need. But, it may have to be limited amount of time due to the temperature of the therapy pool.

Second:

If the therapy pool does or does not workout, just getting in a regular pool may help your pain, and not where you out from the heat. But, you need to find one that is not to cold. also.

Third:

If you find the right pool, you may need to stay there and not do the land PT.

Any form of land exercise tears me up with pain. 5 minutes on the treadmill, 5 minutes on eliptical and 5 minutes on recumbent bike has me in miserable pain. And, I am fairly physically fit. I have learned my lesson about doing any form of land exercise, even with PT.

Sources of pools for you to look into:

YMCA's they offer scholarships for those that can not afford. There members and the community raise money to help those in need. If there is a YMCA near you, look into this. You might be able to just do this with the trigger point injections (I have had them myself in the past.) You could still do some of the stretching exercises that you have looked up on the internet. Or, you could find more that is pool related that you find on the internet.

Check and see if your local NMSS offers a pool exercise program. Do not be intimidated that it is an exercise class. They usually teach them at many levels of activities. I have not taught a specific MS class, but, teach others, and I teach at probably 5 different levels for every class because that what my participants need.

Call (or check the internet) for your area arthritis association to see where there is arthritis classes. That is very much at your speed and level of activity. And, to be arthritis certified, the pool has to be at a certain temperature.

When you do find a pool, regardless of where it is at. Esquire about the temperature of the pool. The most ideal, for most MS patients, is you want it at the lower temperature of the arthritis association's recommendation. Warm enough to relax and stretch the muscles, but, cool enough to not overheat with the MS or turn your spasms to the worse.

Even just getting into a pool in just standing at shoulder depth will probably make a tremendous difference. Walking in that same pool will just be more beneficial. But, you have to be very careful about not overdoing it. Because when it comes time to get out, you will be surprised.

[Maggie2015]

PT approved--appointment date set

Hi, it's Maggie!

I called the PT Center on Monday, and the authorization from my insurance finally came through--I have been approved for 12 sessions!

My first appointment is next week, Wed. Feb. 17. I'll be having an hour and a half evaluation session with a PT who has experience working with MS patients. And my boyfriend will be coming with me (he can't go to all of them, but he wants to be there for the first one to get an idea of what she thinks and what I can try at home and/or on my own and/or with him)!

Apparently, I'll be "on land" for the evaluation session. Kelm10, thank you for the advice about "on-land" vs. "in-water," and for the tips about aquatic therapy. I will ask the PT about the temperature, definitely.

But oh, this is such a big step in the right direction. I don't want to put all my eggs in one basket, but I was feeling so helpless starting to exercise on my own when I'm in so much pain, and now I am hopeful. I'll have guidance and a safe place to start.

Thank you everyone, for listening. You helped so much. I will let you know how it's going.

Maggie

[Seasha]

Great news Maggie!! So happy your ins. came through

Keep us posted on how it's going. I'm rooting for you!!

[kelm10]

great news

Great news!

[Tia1]

Good news! I hope that you have great results. Let the PT know if something is causing you more pain, PT can continue as long as they see progress, so start slow.