Running with fibromyalgia and endometriosis

[Elsiegreeneyes]

I’m wondering if there are any others here who are runners living with chronic pain conditions?

I have both Endometriosis and Fibromyalgia and running really helps to manage my pain and reduce the amount of medication I take. It has become a big part of my pain management programme with a wonderful impact on my mental health and self esteem. I would never have believed I could manage this a few years ago.

However, I’ve recently had a nasty flare up and been unable to run for a a few weeks which has been upsetting and frustrating. I’m still in recovery and building myself back up to my baseline with nutrition, rest, normal activity and longer dog walks before I attempt running again. When I feel ready I plan to re-start the programme as my muscles have become weak and I am still regaining energy, let alone stamina!

I’d love to connect with others who live with similar conditions. At the pain clinic and other associated groups, I often meet people who don’t take my conditions seriously because I am able to run (when I’m at my personal baseline). But they don’t understand how hard I work to manage my health and pain, it can be very frustrating trying to explain that it’s not as straightforward as it appears to be and that I do have legitimate pain and seriously debilitating flare ups from time to time.

During flare ups I can barely stand or walk at all. Yet I can go months of being able to live an active lifestyle, and have grown to love running! I’m missing it and setting realistic goals to get back to it now that I’m beginning to recover.

I’m hoping that others in the forum can relate to my experiences and share some of their own - maybe with useful tips and insights?

🏃🏼‍♀️🧘🏼‍♀️🛁🛤👟🫁🫀🧠⛑☄️🛌🩼🧯💊🥗🚶🏼‍♀️🐶🥤🏅📲⌚️🎧🎼💘

[GoogleMe Graduate]

Hello... similar-ish perhaps (although I have not had either of your diagnoses). Unfortunately, and I am quite wary about saying this, there are some situations where some HCPs 'can't handle the truth' (partly because of attitudes to chronic health and especially pain conditions, but also misconceptions about what 'running' means) If the consultation doesn't require disclosure of running, it is worth considering whether doing so would only 'confuse' them. This also applies to peer groups.

Conversely I don't discuss the specifics of my own health conditions here because that also risks spreading 'confusion' for a variety of reasons (I run, yes, but I spend most of my life in bed). But then... something weird happens when I utter my diagnosis to an HCP - my mouth makes the words but there is no sign they arrive at the HCPs ear or brain, so not quite the same problem as you. I am 'fortunate' that so far I've not had any other conditions where it is important for them to know and nor is there any ongoing input for the underlying condition. It may be that you need to think very carefully whether the places you are looking for help and support can give you what you need.

I only started being able to do more after menopause - much to my surprise (I feel somewhat wry about the current not unreasonable focus on its woes as for me it was a doddle compared with the preceding decades of illness) and began with 'random acts of fitness'. I found (*and still find*) brisk walking painful and with after effects but I was keenly aware of the risks of obesity and inactivity. I really liked the look of the NHS C25K and the requirement not to run more than every other day very much fitted what I knew about my health and how to monitor it.

It's a complex business. It sounds (and I've not checked any other posts) as though you are well clued up on what works for you and not suffering from any maladaptive beliefs about activity, merely burdened with other people's opinions.

[Elsiegreeneyes Graduate in reply to GoogleMe]

Thank you for taking the time to share your thoughts and experiences 😊

As you say there is some confusion regarding living with pain/health conditions/disabilities and exercise. And I find your comments about both brisk walking and menopause very interesting. I’ve heard others also say that walking is more painful than running and I’ve experienced this too, with walking causing more injury than running, which didn’t make sense to me so felt silly saying it out loud - I won’t anymore! And then with menopause, I’ve heard many mixed experiences and the impact it has had on people, demonstrating that we are all unique and need to do what’s right for our individual minds and bodies.

Like you, I felt it was important to exercise to reduce other health risks, and have learned through various pain management programmes that gentle exercise, little and often, is beneficial for a multitude of reasons. The peers that I mentioned previously, live with pain conditions too (different from mine) and exercise is the last thing they feel they could mange on top of the struggles they face every day. However, I do wonder (I’d never say to them out of respect and would never want to judge anyone) if they have tried it, and understand the power of negative/positive mindsets. As you said, you spend most of your life in bed but are still able to get up and out there running which is amazing and should be celebrated! It might not be for everyone but if there is a chance it can even just make you feel marginally better or healthier, it’s worth trying.

I feel that because I run and try to remain active, it ‘looks bad’, leaving people like me to feel like we shouldn’t disclose that information (I learned a big lesson from my PIP assessment), when in fact we are following medical advice, listening to our bodies and should be proud of what we are able to achieve despite living with the struggles we do.

Thank you for what you said at the end about being clued up about what works for me. I’ve learned to listen to my body and sometimes that’s not as straightforward as it could be! But I do try to just stay in my own lane, be realistic and not be too affected by others, though that’s not as straightforward as it could be either! But I try.

Thanks again. And I’m glad that you have found the pace and structure of the C25K programme useful for your conditions too. I have seen others go on to train for marathons and suchlike, but I’m accepting that I may need to be starting and re-starting this programme for many years to come, and humble enough to be absolutely delighted with that and what I can achieve 😊

[Archerygoddess Graduate]

My husband usually runs with me. although he has a chronic pain condition. I didn't want him to start running because of it, but actually it helps(most of the time). People who know that we run often belittle his pain because, after all, he can run. We're apparently 'lucky' that we can run. After all none of us put in any hard work to get here, did we?

What I've found is that it's generally people who have never exercised and won't leave their comfort zone to try and help themselves who have this attitude. The best thing is as GoogleMe says, just don't tell them. I know that we've all found this amazing lifestyle choice and we tend to want to share its benefits with everyone, but sometimes it's better to keep it our secret.

The main thing is to ignore you detractors and just keep doing what helps and makes you happy .I hope you're up and running soon

[Elsiegreeneyes Graduate in reply to Archerygoddess]

aw thank you! And it’s lovely to see that you and your husband are having such a positive experience together.

I’m so pleased that you and GoogleMe have taken the time to reply and can relate to my frustrations. It’s awful that our hard work is undermined and unrecognised. You’re so right tho - we want to share this wonderful lifestyle and help others to see the possibilities and benefits if they give it a try.

I think I will choose my audience more carefully from now on - though it does feel somewhat disappointing not to share such successes and milestones with others who, in one way do understand about living with pain, yet don’t understand or see that there are so many benefits to trying something different from inactivity, increasing medication and always searching for the magic pill that will cure all ails.

I had a reality check 2 years ago with a consultant who told me the magic pill doesn’t exist, I’ll be living with pain for the rest of my life and the best I could do was learn to manage it. It took a long time to get my head around that but now I’m here and have found running to be the closest thing to an elixir that I’ve tried so far.

Thanks again for sharing - you’re both truly inspiring 😊

[GoogleMe Graduate in reply to Elsiegreeneyes]

I completely agree about the mistake of searching for the cure or the magic pill. But I also know that 'have you tried...?' gets very very stale.

Exercise has played an interesting part in my illness as there is good reason to believe that an assumption of 'stress' leading to lots of 'tense and release' relaxation, and stretching and strength activity actually helped to embed my illness in the early days... and it was only when I sensed a subtle change in my condition, after several decades, that I increased my physical activity level. It was nothing to do with a change in motivation or attitude.

One of the reasons I am so passionate about C25K is that in essence, if you just do the programme, it is very simple. It's very easy to add baggage to it - some of which may be essential kit for the individual but may represent an insurmountable hurdle for others, especially those with chronic health conditions. I started without special footwear (I did not possess a pair of trainers) bra (I bought firm control knickers before I bought any sort of sports bra) or clothing, there were no stretches (it didn't ask me to do stretches... and if it had, I'd've had to choose between stretches or runs)

[Elsiegreeneyes Graduate in reply to GoogleMe]

yes I know where you’re coming from about choices. For me it can sometimes be activity or housework. And during a bad flare up I can do neither.

And you’re right, “have you tried…” gets very irritating and I guess I’ve been on both sides of that and haven’t maybe realised it. It’s tricky tho isn’t it? Everyone’s bodies and conditions are so different and unique, what works for me doesn’t necessarily work for others.

I’m still figuring out what equipment I need. I started with what I had in the wardrobe and an old pair of trainers. I did buy compression socks because I had developed a niggling injury- but spend more time wearing them with my nightie because they help with my fibro legs around the house 😅

I’m so glad I found the programme and am able to access exercise and activity that suits my needs and levels. I’m also so pleased that so many lovely, inspiring people have added their thoughts and experiences to my original post - it’s given me lots to think about and a boost of motivation to get me back out there again. It’s too easy for me to get stuck in the house and afraid to go outside after a horrible flare up. But I managed this morning and I’ll see how I am over the next few days before deciding when to do the next run 🏃🏼‍♀️

[Diddidi Graduate]

I was diagnosed with fibromyalgia 7 years ago and my journey started with trying various drugs and having to use a walking stick. I quickly ditched the medication as it made me feel worse. The walking stick was finally ditched when I discovered C25K. But, like others have said, how do you explain that to people without personal experience of managing these conditions? I now take time between runs to let my body heal - and that can mean not doing anything other than some yoga stretches and strength exercises for a few days. Once my energy tank is full, I’m raring to go again. I love the outdoors and it stops the low mood that I feel coming on when I can’t get out there. I also find that if I haven’t run or done any other exercise for a few days, then the pain is awful and it affects my sleep. Running with fibro is all about carefully balancing all these aspects, and I wouldn’t be without it. It has saved me both physically and mentally and quite frankly, I no longer care what others think. If they ask, I simply tell them that fibro is complicated and that I have to exercise to prevent the mother of all flare ups. And I agree, perhaps saying nothing to the so-called professionals is best; unless they are in the same position, who are they to judge? I say, keep running and keep fighting!

[Elsiegreeneyes Graduate in reply to Diddidi]

aw this sounds so like me! It’s amazing that we’ve had the same experience with running improving overall health. And I manage it similarly to you - rests in between to heal, yoga stretches then when it’s right, getting back out there and run!

I had hoped the stick could could be banished but after this latest flare up, I’m now considering crutches for high pain periods, understanding my needs better and that the flares are only temporary, even though I never know how long exactly they will last. This is progress though because previously in flares I would think “this it - this is what I’m going to be like forever” but I do eventually get out of them and have learned just to take care of myself, have self compassion and know that it will get better.

Like you, I do feel that running saved me physically and mentally. Being outdoors and having that purpose and routine has motivated me and I’ve said to others too that it saved my life - sounds dramatic but it really improved my life and brings me so much joy happiness. That’s why I’m so keen to get back to it but know I need to be very careful so as not cause damage or create other problems.

Since I’m beginning to recover, I’m thinking that I was 4 weeks out of action, completely floored and spent most of it in bed recovering. I figure if I spent the same amount of time (3-4 weeks) just gently returning to normal activities and beginning the programme from Week 1 would be sensible and help build myself back into it again.

Can I ask Diddidi… do you still have big flare ups and if you do, how do you get back into the programme again? I know that yoga and stretches are invaluable, but wonder if you have any other tips or even mantras that might help me get back out there again. The outside world becomes so daunting when you’re in high pain and I found that going out the door was exhausting and upsetting, barely able to walk the length of myself. I’ve started walking back up to the running track (5mins from my house) with the dog, just to build a connection with it again and pick up on the vibes I left there in January when I was smashing it! But any other tips would be welcome 😊

And just to add - my sleep has been rotten since I’ve not been running and looking forward to that improving too!

[Diddidi Graduate in reply to Elsiegreeneyes]

It definitely sounds like a very similar situation! I do still get the occasional big flare up when I struggle to leave the house but they only last for up to a week. In that time, I haven’t really lost much fitness and I’ll start again with a short run and then build back up. I also find that Jeffing has really helped me a lot in reducing the pain. The programme I follow is to run for 4.5 mins and walk for 30 seconds. Not sure why it works, but it definitely has helped.

[Elsiegreeneyes Graduate in reply to Diddidi]

I’ve never heard of jeffing before and just looked it up, it’s what I had begun doing at the beginning of my flare up to reduce the stress on my body! I had no idea there was a specific term for it! That’s been super helpful thank you so much 🤗

[Gaye1963 Graduate]

I have fibromyalgia and I've completed C25K and think it has improved my over health. I'm not quick, and it's not pretty but it is a run. However, I have had a couple of serious flares this year I think through stress. When that happens I tend to be kind to myself and tend not to run, sticking to swimming and pilates instead. And I didn't run all last summer because of the heat, as for me that's a real killer.

I rarely take paid medication because most of it doesn't really work for me, but I'm on 20mg of duloxetine daily and have been for five years and that has worked to stop the worst of the pain and enable me to sleep better.

[Elsiegreeneyes Graduate in reply to Gaye1963]

aw this is lovely to hear that running has helped you too! I can’t say I’m a pretty runner either but those endorphins are wild and give me such a boost, I don’t care what people think anymore when I’m out there.

I’m sorry to hear you’ve had some flare ups recently, they really are rotten. But well done for persevering with gentle exercise and activity. I was aware that yoga would have helped throughout the flare but I just couldn’t bring myself to do it, I was so floored and the brain fog was mad! I will try for yoga during the next flare up, and see if it helps to reduce symptoms or the length of flare.

I did some yoga this morning and decided to start Week 1, Run 1 today, inspired and motivated by the lovely replies to my post. It felt good to be starting again. I forgot how gentle the first few runs are so I’m hoping that starting slowly like this 2-3 times a week to begin with, will also aid my recovery.

Thanks so much for everyone’s kind words and encouragement. It’s been a breath of fresh air seeing so many people able to relate to my situation and it’s given me such a boost to get out there again. It can be isolating and depressing dealing with painful flare ups, and I think I was getting a bit anxious to leave the house. This morning was a lovely sunny day and it was so good to have a real purpose to get up and out the door 🏃🏼‍♀️☀️

[Buddyandmisty23]

Hi , I have fibromalgia and I have taking to fitness to improve my health and mental health. I just do the best I can . Before I was diagnosed with fibromalgia I was fit and healthy, I did the couch to 5k no bother but since I have it, it took me awhile to get use to not been fit to do anything, the weight piled on my self esteem was very low and my husband kept on complaining saying don't blame ur illness , so I got it in my head this year am going to prove him wrong and myself. I have struggled a bit but I try not to over do it

[Elsiegreeneyes Graduate in reply to Buddyandmisty23]

I’m so sorry I missed your reply! I’ve not been active on the page for so long because I’ve been having some ups and downs with my pain and the program. Thank you for replying. How are you getting on with the fitness now? I hope you’re managing ok 🤗