Excercise hates me…..

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This topic contains 3 replies, has 2 voices, and was last updated by  Lelainia 5 years, 9 months ago.

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  • September 25, 2011 at 6:12 am #6442

    Anonymous

    Hi

    I was diagnosed with RRMS MS the year of my 30th birthday after experiencing symptoms for little over a year. I initially had some weird sensations in my side (like more organs were over-heating) then after that went away my feet went numb for a while and finally my legs went numb. My numbness commenced with physical activity both times. I was told to keep being active every time I met with my doctor since the numbness did not affect my physical abilities other than some minor balance issues. I kept passing neurological exams through my numbness episodes.

    My neurologist has said “go live the life you did before your diagnosis” and this advice has not been much help to me. Before my diagnosis, I reduced my activity (no gym/weight training etc) to deal with numbness issues in my feet/legs and regained full recovery. As my neurologist suggested, I returned to my “normal activity level” after my diagnosis and commencing medications. The thing is that upon hitting the gym etc, I have had another relapse in the form or chronic headaches/eye twitches that lasted for about 3 months. The neurologist told me to take over the counter pain medications and I was sent to talk with the social worker at the clinic and to physiotherapy. Neither of these things were much help. The social worker was assessing if I was depressed and the physio person did not give me any information about exercise and MS. I just feel frustrated as I want to return to activities but its extremely hard to work with a massive headache. I am now more careful about my activities and am trying yoga in replacement of the gym. I am wondering if there is anyone else out there who is experiencing the same things as me??

    I love being active and its been hard to figure out what is ok. I cannot afford (both the time and energy) to have relapses if they are preventable. I am currently working to complete a PhD and I love my career. I need to use a computer daily (which exacerbates the chronic muscle tightness in my back/neck and headaches that are remnants from my last relapse). I would like to chat with someone with a similar experience but haven’t noticed that others have had this same experience.

    Tracey

    September 27, 2011 at 2:00 am #6797

    Lelainia
    Participant

    Hi Tracy,

    Well my story is not 100% the same as you, I began having major symptoms two weeks after my 30th birthday. I have severe numbness basically from the shoulders up to the top of my head, hands and arms included. I have altered sensation for the remainder of my body. I have had period where I have not been able to feel my legs, but somehow can still walk on them. I’ve got all the damage on my spinalcord, my brain (knock wood) is clean.

    Like you, I have excruciating headaches/migraines. My pain is generally eminating from the base of my skull, but once it gets going, I also get a tension headache from wincing in pain in my forehead. I also seem to be prone to sinus headaches and infections. UGH!

    I was so bad that I not only had chemo (for MS, to try and get into remission) but I also have been under the care of a pain specialist. I had 2 1/2 years of various pain management treatments, including surgery, bi-monthly freezing shots to the base of my skull and medications. It seems to have eased ever-so-slightly for the moment, but the headaches were irretractable, meaning I had it 24/7 for 2 1/2 years. I’ve only had some easing in the last 4 months, but I still have headaches-just not non-stop.

    I also have some tendon damage to my left foot, which has plagued me for the last 2 years and nothing is being done about it. (not for lack of me being the squeeky wheel.) It makes it hard to exercise and I find that frustrating because I get “oh you’ve put on some weight.” I lost about 65 lbs. when I was in the process of being diagnosed, so it’s maddening to have doctors harp on it. It’s not like I’m not TRYING to go about my life and take care of myself. I am sure you can relate.

    Honestly, I think it might be worth looking into seeing a pain specialist if the headaches are cramping your lifestyle. Pain begets pain and you can get into a vicious cycle. I can also relate to people asking about depression. It seems to be the “go to” diagnosis for some reason-as if it’s not possible to be hurting for a legitimate reason. I am always very careful to point out my emotional self is FINE, but it’s my physical self that needs help. Fortunately, I’ve had limited exposure to docs who just want to be pill pushers and not address the real cause of my discomfort.

    Anyone who claims MS is not a painful disease has not walked a mile in our shoes. Damage to the spinal cord causes all kinds of problems and pain and headaches are a part of it. I had this convo with BC top neuro surgeon and he agreed that the lesions at the top of my C spine are probably what’s causing my headache issues.

    Hope this helped, even if it’s just to let you know you’re not alone.

    October 1, 2011 at 6:35 am #6798

    Anonymous

    Thanks for sharing Lelainia. I am finding the medical system/doctors/nurses a maze. Life seems so busy without managing medical stuff….. No one has suggested a pain specialist; just over the counter drugs. I am trying hard not to take too many extra medications at the moment because my body doesn’t seem to like my daily MS meds (Copaxone) and I have had a few of the less frequent symptoms the drug company nurses don’t like talking about. I am living the healthiest lifestyle that I can (minus hitting the gym). I am finding a bit of relief with osteopathic care, yoga and meditation but the chronic things still hang around.

    My neurologist tells me that I am at the very beginning of my disease and that my symptoms are minor. He is correct in some respects but not so much in others. I can link most of my MS symptoms/relapses to strenuous exercise. The headaches I get aren’t as severe as yours sound–they are just chronic and readily formed when something isn’t perfect in life. I do have lesions on my spine as well as some on my brain. A large part of me just doesn’t want to except that things have changed so much over the last year—I never imagined the numbness in my feet would turn out to be a lifelong journey into an autoimmune disease.

    I am trying to learn to react differently to relapses and chronic issues as a means to better manage all of this in life. They have made me very frustrated because I fall behind at completing tasks (household, work etc). I often want to use will power to keep pushing and doing things but sometimes, slowing down is the better option and taking more time to get things done. A lady I met whose had MS for 32 years told me that sometimes you just need to do less and sleep more during difficult periods (its not about doing the same activities slower). Its been a bit trying at times to manage the invisible alien that’s invaded my body since no one else surrounding me can “see” is presence at the moment. I don’t know how to ask people to understand nor do I like asking for help.

    How do you deal with your headaches on a daily basis? My doctor/nurse mistook my frustration as an inability to manage. I am still processing things about this disease so I think its fair for me to express my difficulties at times especially to them.

    I’ve had those comments from a friend about weight (you are overweight and inactive). There’s such a lack of understanding sometimes from others who are not sharing this experience. In all honesty, I don’t want to spend my time focusing on loosing the 10 extra pounds I carry right now because I eat healthy and I want to work on feeling less overwhelmed with life before tackling this issue (it seems so minor compared to other things right now).

    I hope you find some relief from your pain. I am passing positive thoughts in your direction :). Thank you again for sharing.

    October 1, 2011 at 2:28 pm #6799

    Lelainia
    Participant

    Hi Tracey,

    My heart goes out to you. Believe me, I can totally understand where you’re coming from. I am known at my MS clinic as “the queen of rare side effects”, as I’m very drug sensitive. It’s frustrating when you are having unusual side effects and the drug company nurses won’t cop to the fact that a drug can cause problems. Just because they want to bury their heads in the sand doesn’t mean it isn’t happening and it’s certainly NOT helpful. After I had some severe reactions (like I got aspetic meningitis from having IVIG and was very sick) my MS specialist realized I wasn’t kidding when I said I have to be very careful about new drugs and monitored closely.

    WHat I can tell you is that if COpaxone is causing symptoms that are untenable for you, you are not stuck with it. You CAN go back to your specialist and talk about trying something different. There are new drugs coming onto the market now, so we have more options than ever. It’s something to consider. I am also on Copaxone and it’s been the one thing that seems to be okay for me so far.

    I have also struggled with “acceptance”. In fact that’s a dirty word as far as I am concerned. It’s a very button pushing word for me and I wish people would stop using it. It’s loaded with judgement. Here’s the thing: I am NEVER going to feel like it’s okay that MS invaded my life. That’s just never going to happen. What I’ve decided is important is that I ADJUST to having MS. There’s a huge difference.

    I was nodding my head when I was reading about how difficult it is for you to slow down and the desire to keep up with your daily life tasks. I often feel the same way. It’s taken some time, but I do find that I have slowly been cutting myself some slack and when I have a day where I am not feeling good, I allow myself extra rest. I’ve learned to work in short bursts of energy and I’ve also worked on asking for help. I’m an uber independant person (I’m an Aries) and a consummate DO-er, so it’s gone against every fibre of my being to have to slow down and rely on others sometimes.

    The good news is that the people I’ve asked for help (like my husband) have totally stepped up to the plate. It’s been really sweet to see how much he wants to try and make life easier for me. I am still (mostly) able bodied, but for example where I used to do ALL the cooking (because I am at home during the day) he will cook on weekends or we’ll cook together. I can’t tell you how nice it is to share time with him in the kitchen. We get stuff done so much faster when we’re working together. He also pitches in and does dishes. I am very lucky. I guess you can’t get what you want unless you ask and perhaps if you DO ask, it allows other people in your life to nuture and care for you in the ways you need most. I think on the whole, people are kind and want to help, they just need to know how.

    You asked about managing headaches. When they are bad, I have the shots in the base of my skull, I take pain meds and sleeping pills. (So I can get a good night’s sleep-with pain, not sleeping makes things worse.) My best friend is an RMT and when I can hack it, she does some cranial-secral therapy on me. I spend alot of time in bed when it’s at its worst. Thing is, after 3 years of migraines from MS, my pain tolerance is sky high and I can ignore what would send most people to the ER. My body has adjusted to a certain level of pain. Also, I find standing in a warm shower sometimes help too.

    Medical people have also equated my fristration with not coping. That’s not true at all. It’s frustrating to deal with something that is so individualized and unpredictable and you can’t get straight answers. There are some symptoms I can’t just grit my teeth and muscle through and for me, that’s so frustrating. I always come with a can-do attitude, so it’s not from lack of trying! If I’m in the doctor’s office, that means it’s BAD-I don’t come in because I broke a nail. I don’t think they really get it. If they did, they’d err towards being more empathtic, rather than writing people off as not coping. Again, very button pusing! It feels like “you’re doing it wrong”. I’ve taken to getting my best friend to come with me to appointments when I feel like I need someone there for support. She’s been hugely helpful, acting as a buffer sometimes on days where I just don’t have the patience to deal with BS. She’s been a godsend.

    One thing I’ve found enormously helpful is that I joined a younger persons MS group. It’s made a huge difference in my ability to cope and addressed many of the things you’ve talked about-like dealing with the invisiabilty of MS and dealing with all the stuff that comes up in your life when you have this disease. I’ve written a post for the website, which is in the queue about my experiences with my support group, which maybe you will find helpful. I’m not sure when it will be posted, but soon, I hope!

    I am glad you are here. I hope that just knowing you are not alone helps. We may all have different manifestations of this disease, but there are themes to it that are universal. I’m always around if you need to talk. Hang in there!

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