At the age of 50 and with Sjogren's I've officially started training for my first (and probably only) marathon. I haven't ran on a regular basis in a year but decided that I feel better emotionally when I do run. This is an attempt to push me. Yes, I do feel pain. I get a lot of aches in my bones. I can overcome those though. My race is in September and I'm following a 6 month beginner training plan. Any other sjoggies out there that either did this or tried to do it or are doing it now?
Wow! I take my hat off to you :)
Hi Lisa Marie, I'm new here and was only just diagnosed with primary SS. How's your training going? I'm 63 and 5 years ago finished the Baltimore Half-Marathon. Now I struggle to finish a mile walking on the treadmill...HOWEVER...now that I know why I've had such joint pain, muscle pain, and fatigue (and all the other dryness crap) I'm determined to do at least a 5K. Watching my daughter's 3rd students run their Girls On the Run 5K today and not being able to run with them brought me to tears. Best of luck to you, and keep us updated!
Susan
Awesome to see your post. Just recently tested ANA/SSA positive with all the great symptoms of this condition, but just three months ago I'd run 30-40 miles a week. This thing here about stopped me in my tracks and now I'm unsure of what is actually possible in terms of being active. I've been slowly adding activities back in a much reduced intensity to see how I react. Got on my road bike the first time the other day and felt okay, again lower intensity and duration. A little tired the next day but okay. Running has been reduced to maybe 4 miles a week and indoors on a treadmill but I'll take it anyway I can get it at this point. Staying active definitely makes me feel more like myself and I feel better after a workout. I wish you well and keep us posted on your progress.
I don't have a diagnosis but have the symptoms of sjogrens, most difficult is the joint pain and small fibre neuropathy. However I started the couch to 5k running program 4 weeks ago not quite marathon level 😁 but despite the pain, I am determined to carry on,as mentally I feel better for doing it and feel that the fitness benefit must be a good thing. Good luck with your training
I took up running last year---on a treadmill! I'm doing well and can run 4.8 mph for 30 min no stopping, but.....whenever I run outside on a track or street, I just get totally knackered!
Guess I have a ways to go before trying a marathon.
Best of luck with your training.
Calli
(65 yrs old)
Calli, That's awesome! Mostly because you are even older than me..... Haha. I'll think of you next time I feel sorry for myself. My rheumatologist told me not to run on the pavevent because it jolts the joints. Maybe that's why you feel so tired. The C&O Canal among the Potomac River here in Maryland has a nice flat dirt hiking trail that I try to run on. Maybe they'll schedule a race for us someday! 8) 8)
Sorry...totally forgot to check back here!!!!
Training has been really good. And good for me!
I decided that I needed to really do this right. It wasn't just about running but the total me. I decided to use Beach Body's 21 Day Fix plan to help me not only with building my core strength and improving my time, but to guide me towards nutrition. What a great move it was for me! I'm eating clean probably 95% of the time. This has been such a huge improvement for me. I don't have nearly as many issues from heart burn, digestive, bowels, or even pain. Well, some good ol' fashion muscle pain from training is there and I welcome it!
I still have my moments. Achy bones once in awhile. Sleepless nights or complete exhaustion. But I force myself to push right through it. I tend to recover much faster from those moments when I don't allow them to hold me back.
If Venus Williams can still get out on the tennis courts, I can run this marathon!
I'm down from weighing 176lbs to 143lbs. That has got to help some too! My time for a 3 mile run is almost two minutes faster than it has been forever.
I'm so happy with this progress. I know I will achieve my goal. My dream.
LisaMarie, congratulations on your progress! You inspired me to walk a mile this morning. Not much compared to you, but got me back into getting some exercise.
Billylyne, how is your training going?
Clothdoll, we are C&O neighbors; I'm on the Virginia side.
I ran 14 miles last Saturday! My longest ever! I have issues though. Had to find a restroom asap about 10 miles in...I mean..ASAP! I have a sun rash on my arms....yeah, sunblock doesn't help that. It isn't a sunburn. But a rash. I still get my bone pain that I have always had but I think that the muscles that I'm building helps it somewhat. Still loosing some weight..or at least inches. I can't wait to go shopping for clothes that fit. I started seeing a chiropractor too. I noticed some odd pain in the hip/back/leg. Sure enough the curvature in my back was causing one leg to be shorter than the other. Working on fixing that with some adjustments.
Sjogren's causes me to loose sleep yet sometimes. But I push through it. Still get out and do what I need to do to train. Clean eating has helped me a great deal. Processed foods are a no no right now and I don't know how much I will ever allow back into my diet.
Get out and walk! Use apps on your phones like mapmyrun and track it. When you track your progress, you want to make it better. Start with telling yourself to walk 3 times a week. Then take it to 5 times a week. Then walk every day for 2 weeks. Or walk 20 days a month. Next thing you know, you will be adding, run for 30 seconds on one of your walks.....or run 1 minute on every walk. Forest Gump will be cheering you on!
You really have to take control of your health. I know that Sjogren's has a hold on us. But it doesn't have to control us. Especially those of us who are lucky enough to have less symptoms.
Congratulations on 14 miles and inches lost!
I get the sun rash, too, especially on my arms and the backs of my hands. Itchy. It is common for people with certain AI disorders to be photosensitive. When I expect to be in the sun for a while, I wear SPF clothes from Coolibar.com, including flesh colored gloves, wraps (like a thin shawl) over a tank top, and pool cover-ups that I wear as dresses or tunics with leggings. Their gloves this year got awful reviews, so I bought new ones elsewhere this time. Not sure if those types of tops would be practical for you while running, but an athletic apparel store might have something more appropriate. I found some SPF golf shirts at a brick and mortar store at end of season sale last year.
I have mile scoliosis (S curve) that makes my hips uneven so one of my legs shorter. I can imagine a longer leg can make running difficult for you or cause injuries. It caused me a lot of back pain which I remedied by core strengthening via Pilates. Didn't even cross my mind to go to a chiropractor. I've never been to one. I hope you were able to work it out.
No running for me unless someone is chasing me. Luckily that hasn't happened in a long time. I'm all about low impact exercise. I'm up to walking about 2.5 miles now by happenstance. I walked to a point of interest and back the other day. I mapquested the distance when I came home and it turned out to be almost 1.25 miles each way.
Keep on keeping on!
ETA: Oops, quoted portion turned out wrong so I removed it.
I run my marathon this coming weekend. So nervous. I'm not really ready. The most I've ran during my training was 16 miles.
I've ran into issues related to my sjogren's. The bone pain was there a lot. Really tried to push through it. Last weekend, it was IBS causing me to end up having very bloody shorts at mile 6.5. So embarrassing. (I'm hoping that Imodium AD will help that the day of the race)
This has def. pushed me to the limits. I feel healthier for the most part for it though. I will never run another marathon. I think that maybe a half marathon a year to keep me sharp and in shape will be a good length.
The other lesson is not to train a lone. Find a partner to do this. It is so hard physically and having a partner will at least help with the mental. When you first go out and run the long runs, you think, "so peaceful. I will take this time to reflect and enjoy it." Then around the 3 hour you start to really feel lonely. Or at least I have.
The day of the race that should be better. I'll have 2500 friends on the run with me.
I have a rheumy appt Friday. Haven't seen him since I've started this journey. We've touched base online a few times but not in person.
Good Luck. I am just reading this and my oh my it is inspiring. I just saw my cardiologist and after reading this I will get back on track with some type of exercise to build strength and energy. You are amazing and I promise you through the pain and agony you are an absolute winner.
Go LisaMarie!!!
I did it! I kicked Sjogrens in the butt! Full marathon in six hours 19 minutes! Very sore but will recover in a few days.
That's great, LisaMarie! I'm very impressed. Congratulations!
Congratulations Lisa Marie. Fantastic achievement. :D
Woohoo! Congratulations, Lisa Marie!