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Soon-to-be (Hopefully) Re-rider with Fibro, Migraines and Muscle Weakness

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  • Soon-to-be (Hopefully) Re-rider with Fibro, Migraines and Muscle Weakness

    So I've been away from riding for the past 2 years or so. At the start of it all I lost my job, sold my horse, and mostly just focused on getting myself back in order. It looks like I might be able to get back into riding this fall (around october), which is great cause my trainer has a new farm and indoor for this coming winter.

    Part of me is terrified though. There are days I have trouble sitting upright for any length of time, and the weakness is sometimes overwhelming just by standing and walking. I was getting to jumping 3' and was practicing cross country last I rode.

    Anyone have any tips or stories about getting back in? Dealing with weakness while riding? Etc? I trust my trainer and I love her lesson horses so I'm not worried about that. Mostly just personal fears and worries.
    Proud member of the Short Riders Clique
    Blog of Ashe: http://undertheshavings.blogspot.com
    Proud member of the Snort and Blow Clique

  • #2
    I have no specific advice for your situation, other than to go slow, don’t put pressure on yourself to get back to your previous level and most importantly, savor each and every moment!
    Congrats and report back!!!

    Comment


    • #3
      I just want to wish you the best. I, too, suffer from muscle weakness, as well as blood pressure issues as a result of my auto-immune issues. I take care of my horses (at home) every day, but struggle to get myself in the saddle again.

      Yesterday I got a photo from my friend who is currently doing Chemo, AND has a heart condition. She was doing a lovely forward trot on her five-year-old Warmblood. She made my day and inspired me to get going again.

      Best wishes!
      TypaGraphics
      Graphic Design & Websites
      typagraphics.com

      Comment


      • #4
        Yes. Pilates, especially with a trained physical therapist, can be very helpful. Walking or swimming can also help rebuild strength and endurance. I’m back to riding and competing, but I pace myself more than I did previously.

        Comment


        • #5
          Find the joy in it and do what makes you happy every time you ride. Ten great minutes are better than 30 minutes that leave you miserable for the rest of the day. Consider it a new start, rather than a return, if that helps you let go of expectations that you might not meet.

          Comment


          • #6
            I also have weakness and some low blood pressure and heart issues. I have graduated from the Fall Risk category and gotten back my driver license and I am scheduled to begin riding and hope to help by side walking at the local equine therapy. I am also signing up for senior exercise classes. I am over 60 and so is the instructor, and he assures his students that he is no 25 year old and understands age and injury limitations. This is mainly to help me out with personal discipline for an exercise program, it's still too easy for me to be "too tired" to exercise at home.

            I can sit in a chair with a back pretty much indefinitely so I am interested to see what will happen if I have trouble riding, although we can stop the horse I will still have to support myself but as they do a full range of handicap services the staff are very attuned to any kind of change in client comfort and ability.

            I had a hiatus of six weeks one year and spent most of it sitting for long hours with bad posture at work and gaining weight. When I returned I was surprised at how my balance had changed and my trainer at the time had difficulty making adaptations to my now reduced ability, I hope your old trainer is able to internalize that you may want to start off as if nothing has happened but in the interests of your safety you need to start off slowly and may have good and bad days which will not be predictable.

            I just hope to enjoy whatever I can accomplish and wish you the best.
            Courageous Weenie Eventer Wannabe
            Incredible Invisible

            Comment

            • Original Poster

              #7
              Thanks everyone for the kind words and support! I'm already doing yoga, walking, and some basic resistance strength exercises. Big thing is it can be a lot of work holding myself upright, even in a chair, and leg weakness. She and I have been in communication since everything started so I think she's pretty on the level with what I need versus what I want.

              Mostly I'm just scared that I won't last 20 minutes let alone an hour. Obviously I don't expect her to push me too hard, but I do sort of worry about it being a waste trying to get back into doing something that I loved.

              downen: I would love to have my own little farmette with horses one day but I've been worried it'll never happen now. Maybe it will be possible!
              Proud member of the Short Riders Clique
              Blog of Ashe: http://undertheshavings.blogspot.com
              Proud member of the Snort and Blow Clique

              Comment


              • #8
                I totally feel for you. I don’t have your other issues but I have suffered from chronic migraine since 2000.

                i am happy to compare treatments. Currently I am on diluxitine and Aimovig shots as preventatives. Working pretty well, down to 1-2 migraines a week.

                Comment

                • Original Poster

                  #9
                  Hey fordtraktor! Migraines can be killer! Unfortunately the medications my neurologist has tried end up making my fibromyalgia worse! So at that point it's a choice of which I want to manage.

                  Right now the only thing I'm taking constantly is CBD oil, it's helped me a lot in the terms of migraines. I don't get them super often, but when I do they still hit hard: tinnitus and auras to precede it, and then vertigo and pain until it's passed. It sort of helps with the Fibro, but the last medication I tried for that ended up leaving me with tremors which was worse than the weakness and pain so I stopped that.

                  Going to see a new Rheumatologist soon, (had to switch once I lost my health coverage earlier this year) so I'll see what she may have up her sleeve.
                  Proud member of the Short Riders Clique
                  Blog of Ashe: http://undertheshavings.blogspot.com
                  Proud member of the Snort and Blow Clique

                  Comment


                  • #10
                    Originally posted by Finding Serenity View Post
                    downen: I would love to have my own little farmette with horses one day but I've been worried it'll never happen now. Maybe it will be possible!
                    To be honest, I would not be able to manage without my hubby! But we have an 80-acre farm, I think a five-acre or less property is plenty doable, partner or no, as long as you have the income to hire people to fix fences, put up hay, etc.

                    Regarding autoimmune issues, have you explored low-dose Naltrexone? Both my daughter and I are on it, and since starting it, we both have negative ANAs. Google it for more information, but make sure you search for "low dose Naltrexone, " it's a completely different animal from standard dose Naltrexone.

                    Finally, be sure you don't overlook other causes for your muscle weakness. My original dx was probable MS, then Hashimoto's, and finally Addison's disease. Autoimmune diseases often come in combination with others, and the symptoms can overlap.

                    Keep up posted on your riding adventures!
                    TypaGraphics
                    Graphic Design & Websites
                    typagraphics.com

                    Comment


                    • #11
                      Originally posted by Finding Serenity View Post
                      Thanks everyone for the kind words and support! I'm already doing yoga, walking, and some basic resistance strength exercises. Big thing is it can be a lot of work holding myself upright, even in a chair, and leg weakness. She and I have been in communication since everything started so I think she's pretty on the level with what I need versus what I want.

                      Mostly I'm just scared that I won't last 20 minutes let alone an hour. Obviously I don't expect her to push me too hard, but I do sort of worry about it being a waste trying to get back into doing something that I loved.

                      downen: I would love to have my own little farmette with horses one day but I've been worried it'll never happen now. Maybe it will be possible!
                      Any moment spent trying to get back into doing something you love is not wasted.

                      Even if on Day 1 all you manage is to mount, sit, and dismount, that will be a wonderful moment.

                      You have just made me want to try even harder myself to get back. Jingles and best wishes!
                      Rack on!

                      Comment


                      • #12
                        I like betsyk's advice to think of it as a new start, rather than a return.

                        Three years ago, I had just successfully moved up to Prelim in eventing. And then I got sick. First, I was diagnosed with minor Raynauds, hypothyroidism, and a positive RA factor. Shortly after came a Lupus diagnosis and very severe Raynauds. I've now been elevated to Mixed Connective Tissue Disease as we've added Polymyositis to the mix as well as symptoms of a few other autoimmune diseases. I've been through the gamete of treatments with varying results to medications (allergies, leukopenia, low WBC, etc.). I started IVIG in June and it was amazing... but then the national shortage affected the infusion center I go to and I've been put on hold since then. My Rheumatologist has been fighting with insurance for weeks now trying to get me approved for Rituxan as a bridge until I can start IVIG again. Anyway, in addition to treatments I've found that it helps to keep a positive frame of mind and also to limit my own expectations. I had to drop down two levels this spring and basically start fresh with riding. I made my goals small and attainable and removed the pressure from myself. I am now just focused on having fun and most importantly, listening to my body. There are days that I can do intense hour long lessons and there are days that all I can manage is a 10 minute bareback hack. Occasionally, I do still have days I just skip riding all together too. I keep my horses at home so sometimes it is just 20 minutes of barnwork and then a nap.

                        Good luck! I can honestly say that the horses and riding have made a huge difference to my mental health through this all. <3
                        I have Higher Standards... do you?

                        "For the love of my horse, I know who I am."

                        Comment

                        • Original Poster

                          #13
                          downen: maximum acerage I would want would be 15-20 acres! I couldn't imagine having 80! Go you and your hubby! I'll definitely look into the medication as an option and bring it up with my doctor then. Additionally, my mom has hashimoto's (though my thyroid keeps testing perfectly normal), and my dad has "environmental" lupus (Doctor thinks it was his exposure to lead for a number of years that's caused it). I had vitiligo as a kid (Still have the spots but they haven't grown/changed since puberty) so I already have a penchant for autoimmune issues. There is a possibility it's not Fibro. I don't perfectly line up with the specific tender points they have on those diagrams, but I do become severely tender (like seams in my jeans if pressing against something can cause deep radiating pain. The biggest two problems is that a: It fluctuates and b: I still have "full" range of motion (I have chronically tight muscles so I actually don't have the range most people have, killer for getting my heels down!). Getting disability recognition has been a rough ride with no end in sight right now and I constantly have to remind myself that I'm not making it up and that even just mopping the kitchen floor can lay me out if I'm not careful.

                          Rackonteur: I know you're right! Horses keep me sane and happy and I've been somewhat miserable without them. After working on a breeding farm for 2 years I've come to realize I love the care aspect just as much as the riding, if not more. Developing the bond with the yearlings was my favorite part of my work. Jingles to you too!

                          GutsNGlory: Yeah I do think that might be the best mindset. And that had to be rough, especially jumping from diagnosis to diagnosis! While I have signs of Raynauds (My mom has it, but mine isn't consistent) I'm glad I don't have actual inflammation in my joints. Well at least since the last test I had. That must have been frustrated to restart all over again! Glad that you're still able to keep your horses with you though! Your story really helped! Thank you and jingles to you!
                          Proud member of the Short Riders Clique
                          Blog of Ashe: http://undertheshavings.blogspot.com
                          Proud member of the Snort and Blow Clique

                          Comment


                          • #14
                            I have MS. For over a decade I've been riding 30 minutes at a time, I just cannot do any more than that. I do try to ride 3x a week (depending on my husband's schedule and the weather.)

                            Start SLOW. Whatever you used to be able to do does not matter, what matters is where your body is right now. I used to be able to ride 3+ hours, I used to be able to jump 3'6", I used to be able to gallop with wild abandon in the pasture. I will never be able to do that stuff again.

                            But--I AM STILL RIDING HORSES and I hope to go on riding horses until the day I die.

                            Horseback riding is wonderful physical therapy for me, I would not be walking on my own two feet if I did not ride horses. That keeps me riding when I get discouraged, if I do not ride I'll end up in a wheelchair again eventually.

                            I will never be physically strong. The horses KNOW I am not physically strong. As long as I am polite to the horses they tend to give me plenty of leeway when my body absolutely refuses to do what I want it to do.

                            Comment

                            • Original Poster

                              #15
                              Originally posted by Jackie Cochran View Post
                              I have MS. For over a decade I've been riding 30 minutes at a time, I just cannot do any more than that. I do try to ride 3x a week (depending on my husband's schedule and the weather.)

                              Start SLOW. Whatever you used to be able to do does not matter, what matters is where your body is right now. I used to be able to ride 3+ hours, I used to be able to jump 3'6", I used to be able to gallop with wild abandon in the pasture. I will never be able to do that stuff again.

                              But--I AM STILL RIDING HORSES and I hope to go on riding horses until the day I die.

                              Horseback riding is wonderful physical therapy for me, I would not be walking on my own two feet if I did not ride horses. That keeps me riding when I get discouraged, if I do not ride I'll end up in a wheelchair again eventually.

                              I will never be physically strong. The horses KNOW I am not physically strong. As long as I am polite to the horses they tend to give me plenty of leeway when my body absolutely refuses to do what I want it to do.
                              That must be super rough. Go you for continuing riding though! And the therapy part (especially physical therapy) is definitely why I want to get back into it. Go you for having awesome horses and keeping at it!
                              Proud member of the Short Riders Clique
                              Blog of Ashe: http://undertheshavings.blogspot.com
                              Proud member of the Snort and Blow Clique

                              Comment


                              • #16
                                These wonderful horses are not mine, they are lesson horses.

                                The problem I had with my horses (now long gone) was that I had either done all of their training since weaning, had reschooled from being ruined, or my first horse who I, as a beginning rider, had taken from being green broke. I tried telling my horses that something was so wrong with me that I could never ride them like I used to, but it all came down to my horses saying, essentially, "BS, we KNOW you can ride. Here, we will prove it to you" as they ignored my inability to ride well any more.

                                While I ride lesson horses I usually get the lesson horse who came to the stable with very bad training, lots of resistances, a sour attitude toward human beings and I retrain them, at 30 minutes once or twice a week. I tell riding teachers when I first come up that I am an ideal rider to convince beginning (elementary level horses) that even though I have really bad balance and my coordination is horrible, that I STILL expect the horse to obey humane aids. Since I mostly ride at the walk usually our discussions about this do not get too emphatic, but eventually the horses get the message that I expect obedience to my aids.

                                If I had not learned how exactly to time my aids I would have a lot more problems on horseback since I would be wasting my limited energy trying to translate what I mean to the horse, while it made no sense to the horse at all. Timing my aids properly saves me all types of energy during my short rides. It also prevents me from triggering their resistances, and it prevents me from causing new resistances in the horse.

                                I spent over a decade trying to get myself back to where I could jump again. Finally a horse delivered a movement that I probably would have been able to ride decades ago, but a certain muscle deep in my core just did not work at all any more and I rolled off the horse. Darn it! It was finally obvious to me that if I tried to jump, even low jumps, and the horse or I did something not straightforward, that I would NOT be able to stay on.

                                As a consolation prize my riding teacher is letting me work with a double bridle now. I earned the right to try to use the double bridle again by proving over the decade that I DEEPLY BELIEVE that my hands belong to the horse's mouth and I am willing to temporarily lose control in order not to abuse the horse's mouth. The horses usually come back to me, relax, and they let me reestablish contact and control without much problem.

                                School horses are the greatest. They are saints. They deserve to be ridden at least occasionally by a competent rider who knows what to do (some of the school horses do not agree with me about this because they have to work harder when I ride them, and I weigh at least 100 lbs. more than their usual grade school riders.)

                                I really, really hope that you get better enough so you can go back to riding like you used to ride. But if you cannot it is still all right, I bet that the horses will not mind at all. The horses I ride seem to be quite content to carry me around for 30 minutes, mostly at the walk with limited trotting. If I tried to do what I used to be able to do I don't think they would like the results at all.

                                I am pathetically dependent on the good will of the horses I ride. I do my best to ride to the best of my currently limited abilities, and most of them are quite content about it all as long as I do not physically hurt them.

                                Comment

                                • Original Poster

                                  #17
                                  That's pretty awesome you can still work with horses with issues! Jumping is a ton of fun and I really hope I can get back to it. My trainer has a lesson boy who will jump anything and everything so long as you line up to it. He's a big sweetie. For me it'll be whether my body can handle it.

                                  I had a similar reason when I sold my boy, I just couldn't keep up with him and he needed routine and an able body to do everything he loved doing. He's now with a teen pony clubber who is in love with him and he's in love with her. I couldn't be happier for that one but I'm sad I had to sell him. He was my first horse and became a much larger project than first intended.
                                  Proud member of the Short Riders Clique
                                  Blog of Ashe: http://undertheshavings.blogspot.com
                                  Proud member of the Snort and Blow Clique

                                  Comment

                                  • Original Poster

                                    #18
                                    So.... I had been talking to my mom about my worries. And she decided to surprise me with a trail ride at a local place! Took some convincing to get me on, but she eventually did it.

                                    Had a lot of fun, but an hour was definitely too much. I hurt everywhere now (and not just sore unused riding muscles), am super tender, and desperately need a nap. I must have looked like a little old lady walking back to the car as I had a hard time standing upright once I was off the horse

                                    But it did allay a lot of my fears. Jackie, I think I'm going to talk to my trainer about doing two 30 minute walk (and then graduate to walk/trot) sessions a week once I'm able to start doing lessons.

                                    Also kudos to the awesome trail horse I had! He reminded me of my boy and always kept an ear on me as we went about the property.
                                    Proud member of the Short Riders Clique
                                    Blog of Ashe: http://undertheshavings.blogspot.com
                                    Proud member of the Snort and Blow Clique

                                    Comment


                                    • #19
                                      I'm kind of doing the opposite....I'm in my 40s with debilitating fibro, and just starting riding. My son (who also has fibro) talked me into doing a 1 hr group lesson once a week. Then we started volunteering at the barn. Now we just bought our first horse.

                                      For me (and my son), I started small....some weeks we did more ground work and barely rode, or my son lifted the saddle for me, or we went home early, etc.... But we found we LOVED being at the barn, and it got us out of our heads and off our butts....and doesn't caring for another creature usually kind of help you move the focus from your own issues? It did for me, at least. Now we are at the barn most days, and doing an amount of "work" I couldn't have imagined we could have done a year ago.

                                      My "advice" is to start small...stop BEFORE you wear yourself out (harder said than done, this is often my failing), maybe spend more time on the ground than in the saddle if you need to. Even just working a horse's ground manners is theraputic for me, but it builds up my endurance so I can eventually ride longer.. We also always had someone around in the beginning, so if we got debilitating fatigue, someone else could take the horse. The baby steps thing helps both your mind (your fear you can't do enough), and body. But, everyone is different, and all fibro is even more different, so... It sounds like you have a good plan, and the trail ride gave you confidence, so good luck!

                                      Comment


                                      • #20
                                        Finding Serendipity, I suffer with Migraines, bad back, Fibro and muscle weakness. My horses keep me going. I also help a very close friend of mine who had a horrible accident 3 1/2 years ago that left her with a Cerebral Spinal Fluid leak that went undetected for 6 months. She is fighting her way back from that. but is basically being rehabbed like a stroke patient physically.

                                        We have gone from her being able to pet her horse and feed it a treat to sitting on them last year to we are now doing 5-10 minute "pony rides". I walk, the horses follow me. We have built up to the 10 minute mark and are gradually building up from her going 1-2 laps around the arena.

                                        That may be a starting point for you. Don't push yourself to do more than you can physically do at this point. 10 - 15 minutes may be your limit for a little bit. That's ok. Listen to your body, it knows when you've had enough. It takes time to build that strength back that we once had in the saddle. Take it ride by ride, be happy with little victories. How did it go getting on/off? Were you stronger? Did you sit up a little straighter? We are only in a competition with ourselves.
                                        You got this!

                                        Comment

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