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Riders with Rheumatoid

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  • Riders with Rheumatoid

    Helllooo there everyone! I'm 21 and just recently here diagnosed with RA (2 months ago, maybe?)

    I've found it so hard to ride sometimes, especially to get up after a long tiring day of work when I'm already hurting, driving 50 minutes to the barn, riding, coming back home and finishing up housework. It's not that I'm complaining, but it's hard for me to find the strength sometimes when I get so much more fatigued than I ever did before. So disappointing.

    Any advice? Words of wisdom? ANYTHING?! Haha, have a good day!
    "No hour of life is wasted that is spent in the saddle" -Winston Churchill

  • #2
    I know how you feel. It is hard esp in the beginning. What you have to do is schedule your riding/horse stuff. Don't forget to give yourself a break now and again. You might try going to the barn right from work and getting help with the housework. If you have a hubby/SO and/or houseapes then delegate the work! If not consider hiring someone to come in once a week. Or every other week or once a month, whatever you can afford.
    Every mighty oak was once a nut that stood its ground.

    Proud Closet Canterer! Member Riders with Fibromyalgia clique.

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    • #3
      With RA, often the first year is the worst. I thought my life was over. It wasn't, but it sure seemed like it.

      You may end up well stabilized on meds and find that you have more energy and less pain down the line. I was diagnosed right before all the biologic drugs started coming out, and boy oh boy did they make a difference! I've been on Humira since early 2003 and do pretty well on it. I have a more than full time job, still ride my bike and play with my horses.

      I did mostly give up riding, but I think if I could ever get my weight down to a reasonable level again, I could go back to it. These days I drive instead, and I've put on some serious miles in the cart.

      Definitely get some help where you can, though--I do no housework as it's all I can do some days to just get through the work day. We agreed years ago that hubby would stay home and do all the house, land, child and critter care, and I would focus on working. Since I've been on Humira, I've been able to add in some fun stuff (such as the horses), but I don't know if I could handle it all if I had to do housework on top of it all.

      It sucks to have this happen to you so young (I was nearly 40), but you also have the advantage of more energy in general than an older person with RA would have, once you get the RA reasonably under control.

      Rebecca

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      • #4
        Wow - you are so young to be hit with this. As everyone has mentioned, as you become stabilized on your meds, a lot of the soreness and tiredness will become a distant memory. After a while, I discovered that I actually felt better than I had for the previous 15 years. The first year after I was diagnosed, I limited my horse show volunteering to 1 weekend day, instead of the entire weekend, but now I don't worry.

        Even if all you do is visit a horse, you ned to figure a way to keep them in your life. I used to bring in my horse from the field, and sit on the tailgate of my truck next to him. I couldn't hold the lead rope, so I couldn't really do anything with him. Fortunately, he was happy enough to stand next to me.

        People who give up are in much worse shape. Find a way to get in some exercise - When I was at my worst - typing kept my fingers limber, and walking the dog loosened up everything else (even though I had to tie the leash around my wrist since I couldn't hold it.)

        Best of luck.

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        • #5
          I have psoriatic arthritis, not RA, but they're VERY similar (just slightly different in how it develops and the genes involved, I think) and I've had it since I was 10, gradually getting worse, so I figured I'd chip in.

          Like a lot of people said - the initial first bit really is often the worst, because generally you're feeling kind of cruddy to begin with (which is why you went to the doctor and got diagnosed) so then you're feeling cruddy and miserable AND maybe trying different medications. Fun. The thing is - it really does get better once you've found good solutions for YOU. So hang in there. I take methotrexate (which is a relatively old-school drug, there are newer ones) and it makes SO much difference for me. All the day to day soreness goes away, and most of the severe flare ups go away or are reduced a LOT.

          (I still get to hear about it if I do something really physically hard on a bad joint, like spending all day hammering things - I have it in my wrists - but with methotrexate it's not 'crippled' it's more 'take something mild for pain and no more hammering for a couple of days.' Not much different than someone else who'd overused a joint, just my joints might decide they were over used a little sooner than in a healthy person. )

          Don't just wait for the medication to help, though - you will need to think about other elements, also, like how you use your time and what you're eating. (I'm not talking about a major diet change, just paying attention to if anything you're eating makes you feel worse or better. For me, I noticed that high fructose corn syrup and alcohol are both instant flare ups the next day, so I try to avoid them as much as possible, and if it is something I want to have - like a glass of champagne at a wedding - then I know to plan for being worse than normal the next day.)

          And like other people said - try to look at what you're doing and see if you can spread out the physical demands or get other people to help out. With these types of arthritis, it is good to keep moving, but at the same time, being in pain constantly is TIRING. Even if you ignore the issue of it maybe making you not sleep as well, the inflammatory process is hard on your body. So figure out the most important things (classes, job, horse time, whatever) and then look at everything that's left and see what you can just stop doing for right now, what you can ask other people to help with, what you can break down and do a little at a time on multiple days instead of all at once, whatever.

          Then if you're having a good day, or once the meds kick in (and some of them do take a fair bit to really get going - methotrexate probably takes around 2-3 months to get to where it's REALLY making a huge difference when you first start it, because they start you on a low dose and gradually increase it) you can always choose to do more on any given day, or add things back in that you had to stop.

          To be honest, when the methotrexate is at about the right dose for me and I've been on it for a while so the inflammation from the arthritis has really settled down, I can handle something pretty close to a 'normal' life. So you can get there eventually, it's just a case of getting the right medications and adjusting your life while you're waiting for the meds to help.

          (I probably am a bit conservative in my 'normal' life - example being if I was going sight-seeing in London with my friends when I lived in the UK, they'd ordinarily just kind of set off without a plan and see how much they'd cram in; since I knew I might not be up for going and going and going like that, I'd make sure that we were frequently enough somewhere that we could sit for a meal or a drink or just where I could sit but they could look around a little, like a museum or a park, so I could take breaks if I needed them. If I didn't need it, great. If I did, it wasn't a huge departure from what we were doing. We could just have lunch early or whatever. )

          Finally, as far as exercise - and I include horses in this - allow yourself time to warm up SLOWLY. Sometimes a really cranky joint will settle down and improve with gentle exercise, but if you just go and try to ignore it, it gets worse. (My lower back is particularly bad like this - after a long class sitting it can be Very Grumpy, and if I were to leap on a horse right after for a serious lesson I'd regret it. But if I do some stretching exercises or even just give myself a little bit of time on the horse walking around not doing anything except letting the way the horse moves move my lower back, then it gets looser and I'm ready to go. ) Some days, depending on the joints involved, this might mean a bit of hand-walking your horse, or whatever. Just plan it in, so you don't feel rushed to get to the 'good stuff' - heck, a hand walking session can also be a ground manners session for a horse, you know? So sometimes you can combine things you need to do because of the RA with things that need to happen anyway for some other reason.

          Comment

          • Original Poster

            #6
            Not to be cheesy or dramatic - but you guys seriously made me tear up. I have felt so alone and miserable for myself! I did not know the first year was the hardest at all... It makes me happy to know the meds take a while, because I've felt like I've been taking sugar pills for the last month! I personally ride dressage, and I thought my dreams of being an upper-level rider holding a double bridle was out of reach. Now, I know this is possible. I am so happy, thank you everyone for sharing your personal experiences with me. I was starting to think equestrians and Rheumatoid don't mix. Thank you again for helping me find faith!!! <3
            "No hour of life is wasted that is spent in the saddle" -Winston Churchill

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            • #7
              Originally posted by SunsAfire View Post
              Not to be cheesy or dramatic - but you guys seriously made me tear up. I have felt so alone and miserable for myself! I did not know the first year was the hardest at all... It makes me happy to know the meds take a while, because I've felt like I've been taking sugar pills for the last month! I personally ride dressage, and I thought my dreams of being an upper-level rider holding a double bridle was out of reach. Now, I know this is possible. I am so happy, thank you everyone for sharing your personal experiences with me. I was starting to think equestrians and Rheumatoid don't mix. Thank you again for helping me find faith!!! <3
              Feh. Possible, and they're totally finding better and better medications all the time. So even if you don't get to where you'd really like to be right now on meds, 5-10 years down the road there's going to be new stuff to try. (And hey, there was someone in, what, his 80s? Something around there? in the Olympics in Dressage who hadn't even started riding until he was older, so if your plans can't go as quickly as you want them to, you still obviously have time. )

              Also, since you mentioned a double bridle, I am going to guess you have hand issues, so I will share with you some of my Super Techniques for Life With Arthritis In Your Hands. (Most of them - not actually rocket science.

              1. Pay attention to writing utensils. Seriously, it seems silly, but find what's most comfortable to write with, what's most comfortable to hold (some people like thicker pens, others find thinner and lighter easier, whatever) and then try to use those as much as possible. The difference between writing a note with a pen that drags and doesn't fit your hand and one that's super-easy to write with is amazing, and it does add up. (Like, I could sign a check even with the Worst Pen In The World if I needed to. But write notes for a lecture? HAHAHHAAHAHAH. Yeah right.) (I actually use my laptop for college notes, because typing is easier on my hands still, but for tests and quizzes I always make sure I have a pen.)

              2. Get some cheap cotton gloves. (They have them at drugstores for $2-$4 for a pair of two, you don't need those expensive ones from manicure lines.) Get a heavy moisturizer of some sort. I like Lush Lemony Flutter Cuticle Butter, but I have been told this works well with other stuff, too. What's really critical is how much 'slip' it has - you don't want something that your skin sucks up right away, you want something that takes some time to absorb. (Hence the gloves.)

              Apply your cream/moisturizer of choice, and massage your hands. Take your time. Work on your fingers individually, on the joints, in between the joints - I normally just sort of work around however, and then finish it up by trying to make all my rubbing motions 'push' up towards the wrist on the highly unscientific theory that it will help with circulation. (If you can, get someone else to do this for you instead - it's awesome.) Then put the gloves on (to help keep your hands warm and keep the cream from getting all over until it's soaked in. )

              For added bonus, have a hot water bottle or hot pad ready to go and then hold that in your hands/tuck your hands under it when your finished. (Again, helps increase circulation.)

              The whole massage routine really makes a HUGE HUGE difference when my hands feel like someone has secretly injected concrete into the joints when I wasn't looking.

              I often also do an abbreviated version (because it's harder to massage without the 'slip' from a hand cream) before riding, just in the areas that are worst. (For me, that's between the knuckles on both hands.) Loosens 'em up a bit. Depending on your horse, if you're talking a walk break you could do the same then, also, if your horse will be good if you basically drop your reins.

              At least, try to plan during lessons (if you do have hand problems) to have breaks where you can transfer the reins to one hand and just kind of work the other a bit - stretch the hand out as much as you can, then make a fist, then stretch it out, make a fist, that kind of thing - and then swap and do the same on the other hand. Doesn't take long at all, and if you're having a longer lesson it does help just because you're moving your hands from that one position of how you hold the reins. (I do something similar with my legs, because I have arthritis in my knees and ankles, also - I'll drop stirrups and just rotate my ankles, stretch my legs down from the hip, bend them up to flex the knee back and forth a little - and it just helps keep any swelling from building up too much. Particularly before dismounting, I'll take a moment to do the ankle bit because dismounting onto stiff ankles = OW!!!! )

              Oh, and if you do have hand issues, I Strongly Advise having gloves to wear if it's cold or chilly or nippy. My hands use even a tiny bit of cold weather (or super-charged A/C in the summer) as an excuse to try to stiffen up faster, so even if you generally prefer not to wear gloves, in my experience it's worth it when it's cooler, because you just get more use out of your hands if you keep them warmer. (Yes, I am that person you see wearing fingerless gloves during a college lecture in the summer. If they would stop keeping the classrooms the same temperature as a fridge, I would stop wearing them. )

              Comment


              • #8
                Hey there I'm 25 and developed RA when I was 19. Though I'm a bad girl and haven't been back to the RA doc since I was 20. Really didn't like being on methotrexate and wasn't too impressed with the specialist anyway. So I've been gritting my teeth and bearing it since. (Though I also had until recently undiagnosed depression since I was 14, so didn't want to put much effort into my own healthcare).

                One thing I will say, make sure your grooming tools are comfortable to hold. I cannot use those small metal hoof picks at all.

                Be prepared to hear from people that don't get it:
                - Your too young to have that
                - oh I think I have a little of that too

                There is a good story called the Spoon theory referencing "invisible illnesses" on this website http://www.butyoudontlooksick.com/ar...e-miserandino/

                Kdow - My hands are where I have it the worst. Will need to try your hand cream massage suggestion.

                Comment


                • #9
                  Originally posted by Jive View Post
                  Be prepared to hear from people that don't get it:
                  - Your too young to have that
                  - oh I think I have a little of that too

                  Kdow - My hands are where I have it the worst. Will need to try your hand cream massage suggestion.
                  Oh, yes, the 'too young' thing gets SO annoying. (I even get it from doctors. I went to the ER once because my ankle was hurting so badly in a different way than normal that I was worried maybe I'd stress fractured it or something. I specifically told him I had arthritis and listed the joints, and how long they'd been involved where I knew, and he still came back in after the xray going 'wow, you're too young to have an ankle that looks like this!' - gee, thanks, I'll get right on ordering a new one?)

                  I imagine for the massage, in lieu of hand cream if you were desperate you could use some kind of cooking oil - be greasy and not necessarily nice smelling, but it would give you the 'slip' you need for the massage. (If you don't have something as lubricant, I find you can't really massage firmly enough because it's uncomfortable on the skin due to the friction. Not that I really dig at my hands, but it is a relatively firm massage, because the goal is to try to encourage circulation and sort of 'break up' areas where fluid has collected from swelling, so you do need to put a little pressure into it. It shouldn't really hurt, though - occasionally there will be a bit of an ouchy spot, but overall it shouldn't hurt and you should feel better after. )

                  It really is nicest if you can get someone else to do it. If I was going to be doing something I knew in advance was likely to be really hard on my hands over a period of time (say temporary insanity set in and I agreed to scribe by hand for a big dressage show, which my hands would KILL me for) I would probably actually bite the bullet and try to find a salon or manicure place that would let me pay for just a 10-15 minute hand massage only.

                  Oh, other small tricks - those chemical hand warmers. (The ones that heat up when exposed to air?) I tend to have one in my bag even in the summer - again, encourages circulation, helps with the aches and pains and stiffness if you're out and about and can't do anything else about it immediately. I also have a child's sized hot water bottle - it's just the right size for my hands only so I can use it even in the summer without so much risk of overheating the rest of me.

                  Finally, I would say - don't be afraid to make changes or ask for changes around where you live, the barn, etc. that make it easier for you. Like if you find one kind of latch easier to use than another, or different types of clips... That sort of thing. A lot of those things are going to be pretty small inexpensive changes, but if you think about how often you, for example, clip a lead or cross ties on to a horse, all those little moments of fighting with an awkward clip add up. Clips aren't super-expensive, why waste energy on a clip that you find difficult?

                  (Btw, I do agree also on paying attention to the feel of tools in your hand - this doesn't necessarily mean you'll like the fat 'ergonomic' style ones, because it depends a lot on your hand size and what you personally feel comfortable holding. I've tried some 'ergonomic' stuff like kitchen knives that made me miserable because I have small hands and the balance was totally off. So try to notice those things - again, it's small, but when it's something you do frequently, it adds up and it's just adding stress and pain and wear and tear. Get rid of as much of that as you can. )

                  As far as methotrexate - remember that with these sorts of conditions, finding the RIGHT medication is a bit of a guessing game. What works for one person doesn't work for someone else, or causes too many side effects, etc. So give it a chance (because most of them do take a while to hit full effectiveness) but also don't be afraid to talk openly to your doctor about improvements or lack of improvements, or issues with side effects - there's a reasonable handful of medication and medication combinations out there that can be tried these days, so if the first one doesn't work out, it's annoying, but don't give up.

                  Comment


                  • #10
                    Your story sounds so familiar...
                    I was diagnosed with RA at about 22 but my symptoms had been going on for years. I am now 25 and its been an interesting journey. It will get easier but that being said you have to make adjustments. I still keep thinking I can do everything I used to do and the reality is I can't. It isn't giving up to say that, it is being honest. However, you can do what is important to you; you just have to prioritize. As some have said, things like housework etc, if you can delegate or pay someone to do....it helps more than I can say. My DH is amazing in that he does a lot of the cleaning. Things like laundry, making the bed, vacuuming, dishes etc are all pretty hard for me and take me longer and take more out of me than they do him. Thankfully he is ok with doing them for me. I help when I can, but when he was gone for his Air Force training that was one of the hardest things. Sometimes you just get creative. I discovered carrying a laundry basket upsatirs was awful- it hurt and I fell alot. So I carried smaller piles of laundry and took more trips. But if you can avoid having to do it, that helps.

                    I work full time, then usually ride, and go home and get ready for the next day and crash. Organization helps a lot. So does sticking to a routine and schedule but be flexible. If I plan to ride one day but feel especially bad, I will change my rest/other stuff day, take the night off from riding and ride on a day I may have planned to do something else and am hopefully feeling better. Then guard your rest time carefully and schedule it in. It is better if you rest enough periodically rather than pushing yourself until your body forces you to rest.

                    In the summers I groom for my trainer and show when I can. I ride dressage and I jump. I discovered that I do have to make changes sometimes (I have some pretty funny looking reins for a dressage rider) but if that is your priority and your passion you can do it.

                    Everyone will have different experiences with RA. Some people have great success with treatment and are very able for a long time and are hardly slowed down by it at all. Others struggle more to find treatments that work and may have more struggles, but the important thing is to keep working with your rheumatologist and keep communicating with him or her; don't give up. Make sure he or she knows what your goals are so they can help you get there. Find what works for you (as an example....the idea of massaging my hands sounds excruciating to me- even my RA doc touching my joints in my hands hurts! But it does help many people) and what makes life easier for you (e.g. I use plastic cups instead of glass- they are lighter and easier for me to hold) Don't be afraid to ask for help, take a rest, or push yourself.....it all has its place.

                    Feel free to PM me if you have any questions at all and I will be sending jingles your way
                    My blog:

                    RAWR

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