Riding with arthritis

pbracing

Hi all, does anyone have, or know someone with rheumatoid arthritis or sero-negative arthritis that rides seriously?
I have it and I'm trying to build a picture of how I can maintain training programs in order to achieve goals such as sportives and alpine climbs.
The word I keep being told is moderation. I'm 40 years old, not 80, and find it very frustrating that one is expected to dilute ones ambitions.
I suffer from a fair degree of wear in my knees anyway, and ordinarily would be happy to ride around that pain/ discomfort.
I've always done sport, and I'm pepared to accept that motorcycle road racing and motocross have to take a back seat, but I need cycling for my (in)sanity.
Any thoughts and experiences would be greatly appreciated. (Or directions to other topics on the forum).
Cheers, Pete

brucey72

Hi

I'm sorry to hear of your problems and I understand your frustration as I suffer from something called avascular necrosis which is a loss of blood supply to the bones and has resulted in me having two hip replacements and several operations to remove bone and cartlige from my knees. I'm 36 and like you am not prepared to let this dictate my life.

I don't know what you mean by "serious cycling" but I cycle about 150 miles a week in the summer, have ridden 5 sportifs this year and cycled the alps which included doing the Alp D'huez a couple of times and next year I want to do the Marmotte.

I'm not saying it's easy because sometimes I can hardly walk after a long ride but I just down some painkillers and sit with icepacks on my knees for the evening and ususally find the inflammation subsides. I take it easy for a couple of days and then get back on my bike.

When I was initially diagnosed 15 years ago and had my first hip replacement I was told light exercise would help but was told not to push things too hard. I'm still told I do too much but I know my own body and I know when I have over exerted myself. Everyone is different but my advice to you would be to just cycle as much as your body allows because the aches and pains in your knees will soon tell you when enough is enough!!

Best of luck

Ivan

unclemalc

I cannot offer much advice in the face of what brucey72 has said, which shows what can be done if you want to do it badly enough.
I was born with 'talipes' - a congenital condition which (long story short) has meant umpteen ops on feet, knees and ankles to try to relieve some of the problems.
I now have very bad arthritis in both feet and ankles (where there is little in the way of a proper 'joint' anyway).
However, thanks to NSAIDs (Ibuprofen/Voltarol-type chemicals) I can do more or less whatever I like on a bike.
I cannot run and can only walk ~5 miles, but ride - well thats up to me.
See what you can do BUT DON'T OVERDO IT until you know your limits - there is pain thru which you can get over and there is the bad sort which is not worth visiting...
See your Doc for some anti-inflammatory drugs like 'Arcoxia' (doesn't rot the stomach over a long period) and some decent pain killers (Co-drydamol for when its v bad) if you want to go that route.

Good luck.

fuzzynavel

I have got Psoriatic arthritis which manifests itself in a similar way to Rheumatoid...thankfully it is only the non cycling joints that are affected such as fingers and toes.....occasionally my wrists ache after a ride. I do have some swelling in the sacro illiac area of my back which causes sciatica (like) shooting pains down my legs..

thankfully I am on disease altering drugs which seem to be working. I was on Sulphasalizine for a few years but that stopped working....I have now been on Methotrexate for 6 months + and the fingers/toes etc are not as painful now....I can go weeks without needing any pain relief now whereas before these drugs I couldn't find anything strong enough to make the pain go away without making me sleepy!

I am also getting physio to help with the sacro illiac thing.....Life can go on with the right treatment...

Get an appointment with your doctor and make him refer you to a rheumatologist if you haven't already

pbracing

Crikey! Thanks for your replies fellas, much appreciated. I ain't soppy but it's inspirational to know what you contend with to keep riding. I know you probably have good days and bad.
Ivan, your spot on with the kind of riding I'm aiming for.
The rheumatologist is still debating whether I've got sero-negative (psoriatic or reactive), or r.a. I'm on steroids, co-dydramol and have just been put on sulfasalazine. Hoping these will do the trick, especially with my knees- the other joints don't matter so much.

One other question I have is about fatigue and recovery, and how it affects your domestic situations.
If I need a couple of days full rest after riding, (I do suffer a bit with proper fatigue, plus the co-dydramol make me drowsy), I feel bad at leaving it up to my wife to do the chores. I've got a 1 1/2 year old boy also. And there's not a lot of sympathy (understanding) when it's self inflicted. How do you chaps bridge this?

Once again, I really appreciate your feedback.
Cheers, Pete

fuzzynavel

pbracing wrote:

Crikey! Thanks for your replies fellas, much appreciated. I ain't soppy but it's inspirational to know what you contend with to keep riding. I know you probably have good days and bad.
Ivan, your spot on with the kind of riding I'm aiming for.
The rheumatologist is still debating whether I've got sero-negative (psoriatic or reactive), or r.a. I'm on steroids, co-dydramol and have just been put on sulfasalazine. Hoping these will do the trick, especially with my knees- the other joints don't matter so much.

One other question I have is about fatigue and recovery, and how it affects your domestic situations.
If I need a couple of days full rest after riding, (I do suffer a bit with proper fatigue, plus the co-dydramol make me drowsy), I feel bad at leaving it up to my wife to do the chores. I've got a 1 1/2 year old boy also. And there's not a lot of sympathy (understanding) when it's self inflicted. How do you chaps bridge this?


Once again, I really appreciate your feedback.
Cheers, Pete

Thankfully I don't get the extreme fatigue thing any more....I guess that it goes away with a certain level of fitness and working within your limits.
What is causing the fatigue? Is it the riding or do you generally not get enough sleep?

unclemalc

pbracing wrote:

One other question I have is about fatigue and recovery, and how it affects your domestic situations.
If I need a couple of days full rest after riding, (I do suffer a bit with proper fatigue, plus the co-dydramol make me drowsy), I feel bad at leaving it up to my wife to do the chores. I've got a 1 1/2 year old boy also. And there's not a lot of sympathy (understanding) when it's self inflicted. How do you chaps bridge this?

Balancing act!
If you overdo it you're out of the domestic/work loop until you can cope again, but if your immediate family and friends are willing take that on board then .
If you keep on overdoing it so that you become a liability then i) you are not doing yourself any long term favours health-wise and ii) even the best tempered of family will begin to question your actions, leading to discord.

Make sure EVERY little factor to do with your bike, your kit, your type and duration of ride (including the route itself in terms of difficulty, stress etc...) is set up as well as it can be so that the pain induced by your riding is kept at the absolute minimum. That way, chemical support can be kept low.
What you definitely DO NOT want to do is start taking Cods BEFORE you go out - you will overdo it and have to take more to overcome the extra grief, leading to the sort of spiral you don't need.
Don't try and be 'hard' by going out unprotected. It makes me laugh when I see people out in the frost in lycra shorts but loads of kit on top. Stay warm, especially knees and feet.
Make sure you 'recover' properly in terms of hydration/diet etc. Short-term aches and pains are normal after a tough outing but these can be alleviated by appropriate eating /drinking/massage etc. Arthritic pain on top makes recovery more long-term (days as opposed to hours, as you know).
Find that limit where the riding is fun, and there is the least possible grief.

Oh, as well.... I could never say, hand on heart, that it did anything for me, but try the liquid forms of glucosamine and/or chondritin preparations, from the 'net or health shops. Some people I know have had some relief using them. Avoid the tablets tho' - they go through without releasing all of the dose.Sorry to go on a bit, but it's all based upon personal experience and what happens to me won't be the same for you, but if any of it is any use, then WTF.
Every little helps...

pbracing

Thanks again for the advice. All good stuff. Since being on the steroids I don't seem to have the fatigue like before, which was just a complete absence of energy and power regardless of what I wanted to do- a big ride or watch tv, or how fit I was. (btw, I don't sleep well)

I'm trying to keep it sensible, but was wondering how to build up my riding and climbing? Am I wrong to think that I have to spend some time at 90% mhr, as an example. Trouble with that is it needs you to push your body.
I guess what I'm saying is that I can ride 6% climbs all day, but that won't get me into shape to ride 12% again. So to go to 7 then 8 etc requires going out of the 'sensible' zone.

Sorry to go on again, this is me trying to do the best thing, as by nature I'd just ride big hills and pay later- not clever. I guess I've got to find my limits. :?

Cheers, Pete

unclemalc

Check on the previous threads relating to building up your abilities.
In my case its a steady increase in distance and difficulty until I am happy with my stamina in order to do a decent ride, but, as I am riding more or less for myself, that's not the same for someone who has a specific target (local club run; Marmotte etc).
In your case, you may find that the condition steps in and reminds you that you're doing too much at that time.
You'll need to find out your own limits in your own way - just don't get injured doing it.
Enjoy.

pbracing

Thanks Unclemalc, much appreciated. I'm feeling more confident in building it up and achieving my goals.
Cheers, Pete

unclemalc