My RA is getting progressively worse and is effecting my riding and energy level more and more. I take Plaquenil and nsaids. I need to have a re-evaluation by a rheumatologist. In the mean time, I'd like to hear from other RA sufferers about their warm up routine pre-ride, daily routines and any diet tips that keep RA from exacerbating. I've had my head in the sands of denial too long and it is time to be proactive. Thanks in advance.
"You post all your drama on Facebook and get mad when people judge you? You're a special kind of stupid, aren't you?"
Maude, I'm sorry to hear you are experiencing this. I'm interested in the responses here as well. In addition, I'm interested to know if others with RA experience a worsening of symptoms with the change of seasons. I think I'm seeing a pattern in my own symptoms.
I am also on Plaquenil and nsaids, but my rheumatologist recently suggested that it might be time for methotrexate, which i'm trying to delay. Can anyone who takes it comment as to whether it sapped their energy level even more?
OP, sorry if I'm hijacking a bit, but hopefully this information will be helpful to you also.
Maude, I'd say it's time to up your meds. I stumbled along for about five or six years on insufficient meds, and finally did so much better on the right combo. I would talk to a rheumy about at least adding methotrexate (although that alone did not do the trick for me). Once I got the right biologic (Humira) added to the methotrexate, wow, what a difference! It didn't make me capable of doing what I did before I developed RA, but it sure made it possible to do a lot of things that I felt I was losing. I'm also on an NSAID, and have been all along.
Another thought for you (may not work for you, but I'm throwing it out there). When we start going into a flare, most doctors say slow down and rest. I do the opposite. I get on my bike if possible (walking is not a good option for me due to major foot involvement), and if weather does not permit that, I either ride my stationary bike in the house or get on the elliptical. It really sucks at first, but it usually helps within at most a couple of hours.
I've been on methotrexate for so many years that I can't remember how long any more (maybe 12 years? maybe more?) and I've been on Humira for ten years. That one I remember because it made such a huge difference in my pain and fatigue levels. I've had RA for 16 years.
TeeJaysRider, in answer to your question, I don't experience change in RA symptoms with seasonal changes, but certain weather does make a difference, regardless of season. A drop in barometric pressure will often start a flare, and hot weather is almost guaranteed to do so. Cold and/or damp, on the other hand, don't seem to bother me at all.
Hope this is helpful for both of you. If you have any questions about my experience with the meds, just let me know and I'll be glad to share.
I've had RA since 2006. I'm on my 4th Biologic, and Actemra seems to be finally giving me great results. I get an IV every 4 weeks take 4 pills of methotrexate and Diclofanac daily. (sorry for the spelling!) I've found that adding both Omega 3's and Vit D (in the range of 4000-5000 mg per day) has also been a huge help. I also went gluten free in December and I have also noticed that it has helped.
I do notice the difference in the weather, and due to all of my drugs I am super sensitive to heat and the sun. (As in sunscreen every day even if I'm only outside enough to walk from the office to the car). I now line up with the toddlers to get sprayed with sunscreen every three hours at the shows!
I was a bit scared of the side effects of the biologics when my doctor first started talking about them, but because my joints were fusing because of the damage RA was causing we had to deal with disability now, or a slightly possible increased risk of cancer at a later point in life. I'm only 31 now, but I have both wrists fused and one ankle is about 50% gone.
I ride 2-4 times per week depending on weather and if I had my IV that week or not. I sold my english horse, and I'm leasing a western horse as they are closer to the ground and much smoother. My barn family is awesome and are always willing to lend a hand when I can't lift or do something. Even at my sickest if I wanted to ride, someone would help me tack up, lunge, and hold my horse just so I could get on for 5 minutes.
The best thing I ever did was to bring it into the open and tell everyone what was wrong and why. I don't realise how 'not normal' I am when I'm at shows close to home, however after travelling several hours to a show in another state this summer I really appreciated how wonderful my local horse people are
I got diagnosed this past September. I'm on methotrexate, nsaid, tramadol. There is some inflammation and stiffness. I hired someone for barn chores a few days a week. Otherwise it hasn't impacted me as much as some others... about the only real difference I have noticed is that I have less energy and my feet hurt. Otherwise I am still trucking along. I've had back and knee problems for years so I'm used to not feeling great I guess. I started three horses this winter and have a couple others in training, along with my own, and teach a few lessons a day. I'm lucky that I have a couple of great working students who help out, and two girls who work for me part time. So, with some modifications, I am doing okay.
For those wondering about the methotrexate, I haven't noticed any negative side effects. I thinking my low energy level is from not sleeping as well as I used to since I'm kind of uncomfortable at night.
Currently I'm on a DMARD in addition to meloxicam. Last summer I cut out caffeine and sugar. The difference it made for me was huge - I went almost 2 months without any flare ups and I was 95% pain free - yes, and the fatigue was almost gone. Then I cut out milk, and my energy level improved even more. Since Christmas though, I've really struggled to stay on the wagon and my flare ups coincide with how badly I've cheated - yesterday I went to my favorite bakery and I'm having a terrible day today . Exercise as you know is tough - you feel better when you're fit, but it's sometimes too painful to balance a workout with the pain (sometimes it hurts to work out, sometimes it hurts afterward).....anyway, I hope this diet tip helps. I'm no sure if the caffeine and sugar is a trigger for everyone, but it definitely is for me and I'm glad I discovered it....I just need the self control to stay Clean .
Thanks everyone. Some of you are alot worse off than I am and you are inspiring. I am 57 and looking to return to competitive dressage. My former mount injured a suspensory at the show after I earned my USDF Silver. That was 2003 and I haven't competed since except for 2 schooling shows last fall. I am starting all over with my mare's offspring and now that I have RA am questioning whether I'm up to the task of training and competing her. Interestingly, I do not have pain when I ride. Yoga helps but I am now unable to do anything which requires taking weight on my wrists or hands. I had to sell my Petrie boots and have Sergios now that are a softer more forgiving leather. I have an appointmet with my GP on Friday and will get a referral to a rheumatologist. I also wonder if an immunologist would help. All of my siblings have auto-immune disorders which are all different. I have been eating alot of healthy cereal with milk and greek yogurt for the protein. I wonder if the dairy is contributing to the RA now that you mention it. I drink alot of coffee too. Please keep this thread alive. No one steals the show here. Any posts are welcome and we all can learn from them. Maude
"You post all your drama on Facebook and get mad when people judge you? You're a special kind of stupid, aren't you?"
I gave up milk for a short period (one month) and did not notice any difference either when I was off it, or when I went back to it. Being gluten free was a huge difference and if I 'cheat' (like I did last weekend for Easter dinner) I pay for it for a couple of days. My aunt has MS and has had great results with a diet specific to MS, going gluten free was her suggestion. It might be something to ask your GP about.
I did have some back involvement which has limited my riding more than any other joint. I know now that a sitting trot on a big moving dressage horse would kill me (in fact before I sold my English horse a mild lesson would leave me in bed for 24 hours). However I really think that if you find out what the limits of your body are, and find ways to work with them, there is no reason you can't be competitive at what ever level you chose. A big thing for me was booking a day off work AFTER a horse show. It gave me time to rest up, and unpack and gave me a chance to relax after the somewhat hectic show atmosphere. It also meant that when I returned to my desk job I was ready, and not still tired out from the weekend.
Just checking in. In response to the OP's request to keep this thread alive, I'm hoping people will update with how they're doing and anything they've learned in coping with this disease.
I've drastically reduced my caffeine intake, and my fatigue level has decreased. Between that and the better weather, I do feel better in general. I hope all of you are experiencing similar improvements!
I really appreciate everybody's responses here. I'm working with a rheumatologist now to diagnose some sort of auto-inflammatory arthritis - either RA or a spondyloarthropathy (an evil cousin to RA). The treatment is basically the same for either one. Right now I'm on NSAIDs alone (indomethacin) but that may change after my appt on Wednesday.
I notice that drops in barometric pressure really make the condition worse -- I feel like I'm 110 years old on those days. The condition is in my hands, feet, and shoulders, and in my spine. In know it's bad when I feel so crappy that I don't want to ride...
I'm going to try some of the diet suggestions. I'm not much of a caffeine consumer, but I'll see if limiting dairy (which occasionally causes me other problems anyway), sugar, and gluten helps. Anything is worth trying to get the pain and fatigue to stop.
Why do I like most horses better than most people?
Im the "baby" at my rheumy's office and kind of here on coth inbthe ra dept at 23
Im on 2000mg sulfasalozine a day because i have alot of other health issues preventing me being on a strong med, that and i cant handle nsaids barely advil no more than once a day no more than two days a week
Oh its just peachy, my age makes docs think im gonna become a addict if they prescribe stronger pain meds!!!
Tentatively diagnosed last week with RA. Followup visit this week with the rheumatologist. Prednisone brought immediate relief. I am probably luckier than many. Small things were noticeable in January. In April, the *** hit the fan and after doing what she could my GP referred me. I saw a rheumatologist two weeks after my GP decided referral was in order.
Ive had alot of trial/error tack wise if yall want i can post what helps?
As for horse types, nice moving welshies, fjords are rediculously comfy, for me i like the 17hh+ horses (irony im 4"10) the bigger they move the better!
Tack so far:
Jointed irons with that super grip tread
Bow balance with said super grip tread
Mdc stirrups on my jump saddle with grip treads
Custom loop reins made by martin york $180 thier devine!!!
Would consider a saddle from him depending on price its also custom from scratch
Freedom rider loop reins for ponies
Thinline trifecta cotton pad, seriously your back will thank you! If you need da fluff also has sheepskin version
Tendon boots cuz thier easy to put on!
Loff my 20++yr crosby its minmal but awesome and apparently a nut crusher for men lol
For dressage, i like the padded built up saddles
Barnsby is ok but older ones sometimes hurt the crotch
I thought I would update to keep the thread going. I'm now managing to ride 3-4 times a week on an awesome (pulled out of broodmare retirement) western pleasure horse. We have our first show in 5 days! I've also managed to loose about 30lbs since I started caffeine and gluten free in December.
As far as stuff that makes riding easier, I have been using a Back on Track support on my ankle which has really helped. I'm now able to dismount and walk away rather that waiting for my ankle/foot to get with the program before taking a step off. I have a 3 step mounting block which I couldn't live without even if my mare is only 15.1. I also always ride in a helmet and wrist braces. I can ride without the wrist braces but I worry about falling off and trying to save myself with my fused wrists!
I did find that when I rode English the memory foam 1/2 pads were a big help. I also played around with rein widths/thickness until I found ones that were easy to hold on to and gave me 'feel' without being too much for my hand to hold onto.
Hope everyone else on this thread is doing ok, and starting to enjoy the summer.
(Bump) How is everyone doing? OP, did you go on methotrexate - is it helping? How about side effects?
I haven't chimed in here before, but I'm a fellow RAyer. I was just diagnosed in February. It been a tough, tough thing to deal with physically AND mentally, as I'm sure you all know! I found this thread and the other RA ones here a while ago, and reading them has been tremendously helpful. You all gave me hope that I can get better, and I can have a life with horses in it still.
I only started having problems with my hands last fall. At first I thought it was carpal tunnel, and modifying my keyboards at work helped some. But the pain continued and got worse. The day I noticed a weird lump on my index finger is when I finally made a doctor appt. I was afraid it could be RA, as my MIL has it so I've seen it's nasty face before. But NO ONE in my family has anything auto-immune, so I just couldn't believe it!
Anyway, according to x-rays and MRI I don't have any joint damage yet (could've fooled me, the way my finger joints have swelled up) so the Dr. was comfortable putting me on 200 mg. Plaquenil 2x/day, w/ Advil/Aleve as needed, and I was told the Plaquenil could take up to three months to work. I didn't want Prednisone. Yeah, well, a month later I cried "Uncle!" and got some of that 'cause I was miserable... Had feet and knee involvement and days when I could hardly get out of bed.
Plaquenil finally kicked in and now I'm better, although still not "normal." Dr. says our goal is pain-free; to be honest, I've had some days now where I hardly know anything is wrong, but I continue to have days when my hands are stiff and painful (like yesterday and today). Not AS bad, but definitely there. I try not to take a lot of the OTC NSAIDS as they don't bother me and I'd like to keep it that way... today I had to take an Aleve, though.
I'm not riding right now, which totally sucks, but my plan is to keep myself going as best as I can, for the day when I can ride regularly again. That is my hope and inspiration. Thank you so much for your advice and stories, and I hope everyone here is doing okay!
1'st show went well got top 3 placing in all my AQHA classes (even wearing a helmet in my horsemanship class) at the show in June. I went and bought an english saddle on the weekend just so I have the option if I want to ride english I can. Rising trot still sucks though. Next show is this weekend.
I'm currently on Actemra (IV meds once a month), Diclofenac twice a day, Methotrexate once a week. I'm also on a bunch of supplements to counter effect the drugs.
The heat is killing me too, i did put my disability papers in so wish me luck! Im sure if i get it and canpay debts off the stress relief itself will help how i feel! Oh and just going off my ra for this, would love to put migraines with it in the app but my neuro wont, even with over 10 migraine days a month, because thier not dibilitating? Then give me better meds!
I cannot take anything stronger due to medical conditions that would interfere,
I've been recently diagnosed with a sero negative inflammatory arthritis. Very worried that it will affect my ability to ride and compete. It's already affected my ability to work as it attacks my hands which I need to type. I will definitely try to cut out sugar which is my mortal enemy anyway. i'll add dairy and gluten to the list. I don't take anything with caffeine. I'm still in denial that its really an auto immune disease. For those taking Plaquenil, how long before yours worked? Were you able to come off prednisone? Besides the stiffness/pain I have it just seems to sap my desire to do anything on bad days. I just generally feel like crap and I end up just lying around. Others have this general malaise as well?