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    #1

    Physical Therapy

    Hi All!

    I hope I can describe how I'm feeling about physical therapy. I've been going for massage therapy along with stretching and what therapists are supposed to help us. The first time I had massage therapy she did a soft tisuue form and actually felt good and relaxed some of the spasticity. She is now doing deep-tissue with some very intricate stretches etc. I'm telling you the truth I quit today until I see my neurologist on the 20th.

    I'm having more pain and spasticity then I've ever had and I discussed it with her that I had 5 Charly horses last night and just could'nt take it. I could hardly walk today and she did not even take that into consideration. I felt I was being a trooper keeping the appoinment. When she does the deep-tissue I wanted to scream and she said you're supposed to feel pain. Believe me, I know what pain feels like.

    I feel she's raising havoc with my body and does'nt even care. I excesise 4 to 5 times a week and never felt this way. Could this be a flare??? I'm so new to what is a flare and what my normal is. I'm absolutely miserable and discusted with her attitude. I've been doing alot of crying over this. Am I over reacting? She was NOT happy when I told her I wasn't coming back until I discuss with the Doc. Please help me with your thoughts. I really need some input on this.

    Hope your'e having a better day than myself and really......I hate to think I'm whining for no good reason.

    Susie Q.


    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~
    Tags: None
    #2
    Hi Susie~

    I'm so sorry about all this I think I would have done the same thing and quit! There are many different styles of massage and one should gain benefits from them -and screaming pain is not one of them!

    I had deep tissue massages before when I was at my optimal level of health. It helped me then, but not now. Soft tissue is the only way I will have one.

    Yes, the therapist sounds like a drill sargeant with the "pain, no gain" attitude. It's so unfortunate that she did not listen to you. You did the right thing and I don't think you were over reacting - you were in pain! It's her loss, not yours.

    I'm hoping your doctor will refer you to another therapist - maybe one who works with MS patients?

    Whine all you want here - we'll whine with you
    Feel better
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment

      #3
      I'm so sorry you're having such unnessary pain( like we don't have enough) My neuro has told me from the start NO massages,he feels it does more harm than good.
      As I have spinal leisions he said they don't need to be "pushed around".
      I think you're very wise to talk to your neuro.Keep us posted.

      Comment

        #4
        Hi Diamond,

        I'm sorry. Rubbing out a knot from spasticity can be uncomfortable, but never to the point you want to scream out in pain! Then it should feel better (even if only for a moment). I wouldn't want to go back to her, either! Massage can help, but only when it's done properly and by doing what helps you.

        Physical Therapists have always told me if what they are doing causes pain or makes it worse, to tell them and they will stop. I've seen lots of PT's over the years and am always told the exact same thing. Aggravating a symptom is something they want to avoid. It's always possible to create further injury as well. My dad had a tear in a tendon that came close to severing completely. If not for the PT stopping his sessions until he saw his doctor (who ordered a MRI), more serious injury would've been inevitable.

        I did break a bone a few years ago, and because of the injury, whenever the muscle group that was involved is stretched, it hurts. They always give the exact same explanation for why it hurts, and are never surprised when I say something. (I've also had a rehab doctor tell me the same thing the PT's have). But then they always back off how far they stretch that muscle afterwards. It's only because I understand the why's behind it hurting and the importance of stretching it, that I try to tolerate it as much as I can. But if I even if I look like it hurts, they stop.

        In the meantime, call your neuro and explain what is happening . He/ she might order an MRI to see if the increase in spasticity might be from an exacerbation. They also might prescribe (or up the dose) of a muscle relaxant like bacloflen and/ or prescribe some steroids if it's thought to be a flare. I would imagine your neuro will also tell you to stop going to PT, since your pain and spasticity is only getting worse.

        Good luck ,
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment

          #5
          Massage helped me early on and I have a very nice I Joy massage chair I bought used, I used it everyday for a long time but now I could not sit in it for a cycle if you paid me! I'm finding in general my back is getting more and more sensative to touch and the above about " pushing the lesions around" makes sense.

          For me I find gentle stretching is the best thing, pt and massage are too aggressive for me now.

          Comment

            #6
            MRI

            Hi dear friends.

            Thank you for your responses and allowing me to vent. Kimba, I did what you recommended and called my neurologist and he wants an MRI before I see him on the 20th. I took it easy today and felt better. Tomorrow I'm going to try and use the recumbant bike. I also wanted you all to know my Doc stopped all therapy. I

            I'm so happy for those of you that massage works for you. Seasha, I sw you went from deep tissue to soft. Is that because your MS has progressed?

            One other thing I want to ask you all. At my last appointment my doc told me we won't know for sure what type of MS I have for about six months to a year. He has me as RRMS. Is that to see how the meds work? I'm going into my 11th week of treatment. If you have any thoughts on this please share. I feel since I began therapy I might be in a flare but not sure.

            This disease is really something. It's very difficult to comprehend and gets fraustrating at times. It keeps you on your toes how to listen how your body feels. I missed exsercising this week but tomorrow I'll give it a whirl. Oh........I'm just rambling. Couldn't sleep. I'll go back and try again. Nitey....nite

            Thanks for everything. xoxoxoxo

            ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **


            Diagnosed 6-28-14
            RRMS
            Alone we can do so little; together we can do so much. ~Helen Keller~

            Comment

              #7
              Hi Diamond,

              I'm glad you called your neurologist. I'm glad you felt better, too.

              This is from a UK link, but this is the basics of why your neuro wants to watch your progression for 6 months to a year. It can also take 6 months (or longer) for a neurologist to determine whether or not you are still recovering from a flare if you have RRMS.

              "Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.
              However, this often only becomes clear over time as the symptoms of MS are so varied and unpredictable.

              A diagnosis of relapsing remitting multiple sclerosis (RRMS) may be made if:

              you have two relapses of your symptoms more than 30 days apart
              you have one relapse and an MRI scan shows new myelin damage or scarring three months later

              A diagnosis of secondary progressive multiple sclerosis (SPMS) may be made if:

              you have had relapses of your symptoms in the past
              you have become steadily more disabled for at least six months, with or without relapses
              MS never starts out as secondary progressive. However, it is possible for someone to be told they have this type if they have had unexplained symptoms for some time.

              A diagnosis of primary progressive multiple sclerosis (PPMS) may be made if you have had no previous relapses of your symptoms, and:

              you have become steadily more disabled for at least one year
              an MRI scan shows damage and scarring to myelin
              a lumbar puncture shows antibodies in the fluid surrounding your brain and spinal cord

              In rare cases, some people with primary progressive multiple sclerosis can have relapses. This can make it even harder to clearly identify what type of MS they have." (This is known as Progressive Relapsing MS)

              http://www.nhs.uk/Conditions/Multipl...Diagnosis.aspx

              You can also learn more about how each one is diagnosed here:

              http://www.nationalmssociety.org/Wha...g-MS/Diagnosis

              http://www.nationalmssociety.org/Wha...g-remitting-MS

              http://www.nationalmssociety.org/Wha...Progressive-MS

              http://www.nationalmssociety.org/Wha...Progressive-MS

              http://www.nationalmssociety.org/Wha...e-Relapsing-MS
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment

                #8
                Thank you Kimba!

                The links were very helpful. No wonder you and Seasha are on the moderation team. So knowledgable.

                Your'e the best!

                Susie Q


                Diagnosed 6-28-14
                RRMS
                Alone we can do so little; together we can do so much. ~Helen Keller~

                Comment

                  #9
                  Awww ... thank you, Diamond. I've learned so much here and just glad I could help!
                  Kimba

                  “When you change the way you look at things, the things you look at change.” ― Max Planck

                  Comment

                    #10
                    Kimba

                    After my appointment Monday.......yes you were right. I am in a mini-flare and told him being new to all this how do I know it's a flare. Your info was so dang helpful. He told me to cancel my vacation and physical therapy is stopped til i regain more strength in the leg. The fasticulations are out of site. He said those were some of the worst he's seen besides some of his ALS patients. So I'm trying baby stretches, walking in my apt. and my recumbent bike. He's beefin me up to the 40mcgs of rebif because it's time. I'm a little scared about that. And he told me it's time to get a cane until I get my confidence back. He saw some regression in my right let and arm when testing for the muscle fibers as they have shrunk some since last appt. So that's it in a nutshell.

                    I have mixed emotions but attitude is still ok on certain days. Thanks so much for your knowledge and help. I really need this site and very grateful for it.

                    Love to all......
                    Your friend,
                    Diamond57


                    Diagnosed 6-28-14
                    RRMS
                    Alone we can do so little; together we can do so much. ~Helen Keller~

                    Comment

                      #11
                      from my Massage Therapist

                      I posted your comments to my massage therapist on facebook (did not use your name) and here is her response. She is DISGUSTED with your therapist:

                      Oh my gosh! That therapist is definitely not acting in this woman's best interest. Massage therapists are supposed to listen to our clients' bodies and this woman's body is clearly saying no to deep tissue work. A massage should never ever be painful, with the one exception of trigger point therapy, but even then it lessens within seconds. It sounds to me like this therapist is forgetting her training and is forcing an inappropriate treatment onto an unwilling client and I am not happy about it. This poor woman needs to follow her instincts, stop seeing this therapist, have her doctors make sure the therapist hasn't caused any damage, and then find a much more compassionate therapist.
                      You are in the driver's seat, but God is holding the map

                      Comment

                        #12
                        Ziphili0

                        Thanks Ziphli01 for not putting my name on because I'm not on FB.I'm a pretty private person except for her. I went to my neurologist last Monday and now I'm in a mini-flare. The therapy was stopped the day after. I know what I have to do.....but I'm telling you when I'm ready for therapy my doc told me what to do. I'm doing at home is walking when I'm not to tired, light streting and the recumbant bike. It's that dang fatigue that's a killer but doing better. I took a video on my phone and should the doc how bad my fisticulations were and couldn't believe it. He said they were like what ALS patients have. Thank you so much for the information and mostly......your kind concern.

                        My best!
                        Diamond


                        Diagnosed 6-28-14
                        RRMS
                        Alone we can do so little; together we can do so much. ~Helen Keller~

                        Comment

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