Morning all,I'm just looking to see if anyone is or has been in the same boat regards walking.
When I was diagnosed last May I was still able to walk a few miles (school run) not easy as such but I could do it. I was doing 12k steps a day.
However, Since September 2023, so now nearly a year, I've really struggled walking any distance at all. That was when I was on 50mcg levo. My anxiety went through the roof and whenever I tried walking even short distances, my muscles would start aching and my body felt like it was shutting down. It was terrifying, I still don't know if it was anxiety or the affects of being under medicated.
After a truly awful year, I'm finally starting to feel physically a bit better some days and mostly I'm doing about 6k-7k steps per day around the house etc. I still don't have any energy per say but I'm not on my knees all day long.
I really want to start getting out of the house more, I'm really anxious about walking for more than a few minutes. I get really stressed about it (which obviously doesn't help) and I'm avoiding anywhere I can't go straight from the car to sitting down.
Now obviously my fitness and muscle strength has been affected by doing nothing for a year and I now don't know if it's lack of fitness, anxiety or undermedication that is the issue? Or maybe a combo.
I walked to the end of the road and back this morning (0.5k) and my muscles felt all shaky and tired when I got back. I've had to lie on the bed for half an hour to recover.
So has anyone else been though this? Should I just keep going and try to improve my fitness and muscle strength?
I'm 6 weeks into a new higher dose of 100mcg and have a few weeks to go until testing..possibly need another increase then.
Written by
Dahliasanddaisies
To view profiles and participate in discussions please or .
It looks like you convert well looking at your previous results so hopefully as this latest increase settles in thing should continue to improve, you've done well to optimise your vits and mins so everything is looking good.
I used to be just the same and since optimising I've gradually been able to increase my steps and recovery, I literally started with a daily loop which I would only increase once I could walk it at a reasonable pace and it didn't leave me shattered, really important to allow whatever recovery time you need between any activities, I'm now jogging several times a week for 20 mins and rowing
I found a fitness tracker really helpful, one with heart rate variability which shows your recovery
I’m like that too. Sometimes I run out of energy really quickly and feel like I’ve hit a wall and start walking like a puppet . I felt absolutely great the other morning - went for a short walk around the marina, had a coffee at the cafe there, got back home and decided to tackle some housework. In my mind I had visions of cleaning all downstairs because I literally felt like I could do it, but about 5 minutes into mopping the floor all the energy just swirled down the plughole! All my muscles ached like hell. I had to lie down and then fell fast asleep for an hour! Do you have a park nearby? I go to my local park for a walk sometimes because there are benches to sit down on for a rest every so often.
It's so weird isn't it!! People think I'm mad/exaggerating. Yes there is a park at the end of the road, but just walking that far is a stretch right now, hopefully I'll be able to walk around it soon 😀
Yep - very weird and very frustrating. I don’t know how I can go from feeling great to feeling like crap with no warning…from full on to f*** all in a flash! My journeys all depend on: how far from the car I have to go when I get there? Is there a toilet nearby? How far from home is it? Is it somewhere I can go in the morning - as my saying goes: if it’s after 12 midday - no way! Sometimes I feel so well I set off for a walk feeling like I could start jogging, then get 5 minutes down the road and start slowing down, seizing up! Hang in there. We’ll get there.
Yes my life has got very small! Someone asked me round for a drink (can't drink) at 6pm. Oh how I laughed 😅 Trying to figure out summer holiday activities which don't involve much walking is hard. I really hope that next summer isn't like this. I want to go on holiday
I would literally go to bed at 6pm if I could get away with it! 🤣I hang on until I can’t stay awake any longer… 830pm! Next year we’ll be like new people. It’ll be like we’re aging backwards!
🤣🤣 I’ve not had to go to bed in the afternoons for a while so I think I’ve improved too. I used to go to bed every day from 1pm until 4.30 and then back to bed again at 830! I haven’t had to do that for a while. Lots of things are better - tinnitus has gone, terrible ear pain has gone, constipation loads better, IBS loads better - has been like a miracle (not taken any meds dor weeks!). I just need my aches and pains and fatigue to improve more…and my weight to come down.
That's brilliant news! Yes my rest time has decreased. I still go for a lie down in the afternoon but usually only 30mins. Yes to the tinnitus!! So nice that's gone away. My eyebrows are back too. No headaches, like you say it's just the fatigue and muscle weakness lingering (well and the anxiety, be nice if that buggered off!)
Horrendous! I used to get pain like being stabbed in the ear with an ice pick! Then stabbing pains in all my joints …like being jabbed with a needle by an evil elf!!
This is exactly my next goal after 1 year stuck miserably at 50 Levo 10 t3; and the last year having worked up to 100 Levo 10 t3.
I ran running races monthly, with a handful of half marathons and marathons, in the 2010s.
Deep down inside - the fact that this disease stole my running is one of the hardest things to deal with.
I now count progress in just having a functioning day where I can be active enough to clean the house, go shopping, go on business trips, etc.
All the things I used to do without thinking and THEN I’d add in a run , stretching and some weight training.
As I get optimal (and also work on my iron to tackle my breathlessness) - I am determined to increase my daily walks of 2-3 miles to a daily jog of the same. I haven’t crossed over yet : ) I am not pushing myself. It will happen when it happens. But I have to believe I’ll get there again. No marathons of course. No hard runs. But I’ll be darned if I won’t do a light jog one day without consequence!!!!
Yes I feel your pain. In fact, looking back not being able to run any more was one of my first symptoms. I was training for a 10k but I just couldn't do it. I'm not quite as far along as you, but it gives me hope that I might be able to clean my house again soon!!
I'd love to set a target of walking a section of the coast path or something. I miss being able to use my body
I am finally nearing top quradrant for ft4 and ft3 both and I don’t want to jump the gun but I feel… better than ever. Time will tell. Will probably have more ups and downs but there is hope!!!!!
Pre hypo I was very fit, even though I have Fibro, Ehlers Danlos and PA I went to the gym 5 days a week, used to row, for upto an hour, go on the bike, run on the treadmill. Then I go into weights and had one to one tuition withdeadlifts and other whole body lifts, barbell squats. I loved exercise and always felt full of energy. Then covid hit and shut all the gyms and mine went bust. Later that year I got diagnosed with hypo.
I feel like hypo is the straw that broke the camels back. 2 years ago I went back to a gym, but never enjoyed it that much. I found it much harder than before, I was getting pain in my feet and knees, it became a chore to go, something I've never experienced before.
I feel like being hypo has limited the energy I have available and I'm not reovering as quickly. I made the hard decision to suspend my membership as I might need surgery on my foot and will be unable to go for several months.
Its really hard as exercise was always as much for my MH as physical but right now I dont feel able to continue. In the future, who knows?
Yes it's so hard, like you, I used it for my MH as much as anything. It's no surprise my anxiety is so bad these days. I'd settle for being able to walk and do a bit of yoga! I miss my gym classes
And I feel like anyone who isnt hypo doesnt understand. Doctors and other health professionals really do take the attitude that a little white pill everyday and you'll be running marathons in no time.
I recently saw a NHS physio and explained I was getting pain after exercise, especially the following morning, so much so I was hobbling around, and I mentioned struggling during exercise and how hard I found it and he was so blase, kept going on about setting myself fitness targets.
Either his peopke skills were severely lacking or he misheard what I was saying. I'm not a target driven person. I couldnt give a monkeys about setting rowing records. I just wanted to not be in pain and feel like I'm a 100 in the morning. Needless to say I didnt bother seeing him a second time.
I don't think anyone can understand unless they have lived like this. It's such a random condition where you 'look' normal. Everyday tasks that most people wouldn't even think about become difficult and they can't comprehend why you can't do them anymore.
Yes it doesnt help that you look normal, arent in a wheelchair or on crutches, sadly most people's very limited exposure to disability is usually something obvious like a blind person with a guide dog or cane, someone in a wheelchair, maybe a deaf person using sign language.
They cant conceive that you can look fine on the surface but feel like dying inside. But there are so many invisible illnesses, strokes, heart disease, lung conditions, MS. Years ago when my Fibro was very bad I had a blue badge, I was only in my late 30's or so.
The number of times I was challenged by people indignant about the fact I used a disabled space and who assumed I was faking it.
Thanks slow dragon, I'm on Accord. Tried and failed with a few others. Always get accord now. Been working up to 100 for 3 months (87.5 for 6 weeks, then 100 for 6 weeks) got a blood test in 2 weeks, looking forward to seeing my levels now.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.