Been a long time since my last post ……have gone through a CBT course ,which helped me to think a little more positively for a while, but having always been a glass full rather than half empty person …..hasn’t in the longer term made much if any difference . Have had 3 cardioversions plus 1 ablation over the past three years, have had a few changes to my meds too, have tried and succeeded to lose some weight ( not as much as I would really like !) continue to eat sensibly ( have a thyroid problem ) so have plateaued now . Desperate to lose more weight- which I believe is linked to lack of good mobility ! I cannot walk more than 20 paces or so unsupported, further albeit very unsteadily, using a rollator, have stopped using walking poles due to arthritis in my upper spine and neck (extremely painful!)
I desperately want to get back to skiing , have been trying Pilates, tai chi and several other types of core building exercises , none of which I can do standing up due to the sudden onset of absolute exhaustion ( whereby my whole body feels unable to support me ) and would result in collapsing in a heap.
I recently sent for a car disable pass because of my inability to walk far , have been using a lightweight battery chair when my hubby needs to really walk for his fitness and I can keep up ……… but choose to walk as a preference to help build my strength. I cannot tell you how fed up I am of battling this ridiculous exhaustion and tiredness that is ongoing . I am trying so hard to improve my situation . Tiredness, atrocious balance , insomnia , dizziness, feeling of nausea, lightheadedness , arthritis…it seems it doesn’t matter how hard I try .things just don’t change!
When I checkout the conversations on several of these sites , I look to see if anyone else has as many frustrating combined symptoms ????? I want to go skiing again !
Whinge over 😔
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Keibval
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Right - I'm going to kick off here. Your self esteem seems to be low. I can understand this with what you have been through. You will go skiing again but only you can make that change. Once you beat the fear you'll feel so positive and move on. You have many problems but I think you can overcome them.
"things just don’t change"
Things do change - they will for you. Take small steps and don't expect things to change overnight - that won't happen.
Not much fun to deal with all that - it's how I've felt today. It passes. I think your insomnia needs to be dealt with first - have a chat with your medic about that one. A good nights kip might help no end.
You will do it Keib - don't expect it to be easy but you will get there. I'm trying to be positive but understand your complete frustration. Small steps and build up your self confident attuide slowly. Even if it's one thing every week ie lose another pound in weight.
bless you .....it been going on for 6 years now so yup, getting frustrated .... .I talk to my inner self regularly and say things like "this time last year you couldn't do this and now you can albeit it slowly "....I guess I am just impatient 😌
That's not impatient Keib - That's a normal response. When you talk to your inner self be postive - negative will get you no where. You can do this - I just know you can. Fear is the worse thing with this condition. Beat the fear and you'll beat the rest.You can do this I'm sure. I've said it before and I'll say it again. I live by these words.
Without fear, there’s no challenge. Without challenge, there’s no growth. Without growth, there’s no life.
Have you had your thyroid levels checked. I was feeling totally drained of energy and was then told I had an under-active thyroid. Pills to rectify this gave me back my life.
Here's your problem. All you describe is suspiciously thyroid sounding to me.
Your doctor is unlikely to help you sadly. You are going to have to learn how to help yourself. I have big thyroid issues, Levothyroxine has never helped me. I recognise all the symptoms to do with balance and walking and pain etc. My feet are numb but painful. My legs are like lead and wobbly. I can't seem to find a stable way to stand still.
For me this is a lack of T3 thyroid hormone. Not a lack of T4 hormone. But all the NHS will give us is T4. They don't do the right tests either so we end up having to do our own. On paper my GP says my results are "fine" but I'm barely functional.
I suggest you hop over to the Thyroid patient forum on here and join that one and start asking questions and reading up other patients stories and questions. I'm betting you have never had your TSH, FT3 and FT4 checked at the same time and received a written copy of your results? Well that has to change. You sound American to me, that makes it easier in some ways because there are more practitioners out there to call on. But you need to understand your condition first and then to understand the basics of treatment for it.
Lots of very experienced people on the thyroid forum. But you will need to read up a lot to get a grip on your condition.
Good idea of FancyPants to have a look at the Thyroid patient forum on Health Unlocked. My goodness those ladies there know everything about the thyroid and how to get it functioning correctly! Mind you my AF caused me to feel drained like you and unable to walk far at one time. A third ablation really helped, as did changing my diet and losing a little weight.
I empathise because for various reasons have been where you are now - I have a neuro-muscular condition which means I had to let go any hope of ever skiing again, scuba diving or offshore sailing. But once I accepted that and looked for other interests and found other friends - because your social life is often entangled with your interests - my mood improved and I started to focus on the activities I could do.
Bottom line - unless you get to the cause of the symptoms and are able to have good treatment skiing is not going to happen. I think Jean’s suggestion of having both thyroid AND parathyroid tested in more detail an excellent one.
Your mood is affected by your ailments and they are pulling you down so as much as CBT can help anxiety, it’s not going to get you back skiing so I wonder if you park that notion for the time being, have it as a long term possibility and pull your focus a little closer and set smaller goals for yourself?
Have you got a really good Physical therapist/coach? You can’t do this on your own because they will give you realistic goals and help you achieve them. I had a brilliant neuro physio who helped me - done the ordinary physio but because the neuro physio had so much more information and experience they knew exactly what would help me - which turned out to be intensive exercise on special bike for up to 90 secs - 4 minutes rest - go again using arms. That’s how I got back some strength and balance but it took over a year so you need patience.
You may need another strategy but get good advice.
would like to get back into the gym but not too keen whilst the Covid is still wreaking havoc and I do see a physio who is much better than my previous one so looking forward to seeing him again in the coming weeks......
wouldn't that be wonderful...... if only my bladder would sleep too! record so far is up 13 times in a night !!!🥶 not always that bad , have seen doc ..... but still generally been getting up every night at least 3 times.🥴 crazy thing is I can go from morning to evening not even wanting to wee........then there are occasions when I can be just not needing to wee and I get up to do something and suddenly I cannot move for fear of piddling my pants for goodness sakes!!!!😱 ha ha ....ladies probs here , sorry fellas !!!
Know how you feel. I felt like that a few years ago and went from exercising nearly every day to no exercise at all for nearly a year as I was so afraid of the symptoms, fatigue and breathlessness and over taxing my heart. You can get through this and i am sure you will. Thankfully I got on a Phase III cardio rehab course through my local hospital and have not looked back since. I haven't been skiing since then as the first winter I had a total knee replacement and then we were in lock down! I would love to go skiing as soon as I can now though I feel it is just a little too early for oldies like me with other co-morbidities (I love that word) to start traveling after the pandemic ( I hope we are through the pandemic now). I was hoping to go skiing with an old neighbour of mine from years ago who had gone through cancer - twice, and also had bad heart problems but unfortunately he died just as we went into lock down a year ago last November/December time so couldn't even go to his funeral. So glad I was able to visit him a few times after we came out of the first lock down. The reason I took up skiing at 50 was that on my first ski trip I had seen an 80+ year old who could barely walk get on the ski lift and swish down the slopes and thought how much I would like to do that at 80. I am working my way towards that - and of course ski passes are cheaper for over 80's - if not free where I used to go skiing with my son who lives in America - though personally I would rather be 30 years younger than get a free lift pass
As for the sleep problems I was prescribed sleeping tablets by my Doc and advised to take them for 4 days at a time and then take a few days off from taking them as I was worried about becoming dependent. I still don't sleep well but my wife tries to make me take a break mid morning and then at lunch time when I usually snooze - I still fall asleep in front of the TV at about 8 pm but let's face it there's not much worth watching on there anyway!
Hi. I had thyroid problem which caused the AF undiagnosed then a stroke.
I had terrible no energy.
1.Changed from Metoprolol
2. Bisoprolol
3. Helpful but no control to AF.
4. Went to private Cardio Specialist - he did my complete history
5. Undiagnosed Thyroid Cancer caused Af caused Stroke.
Working on AF contol Diltiazem CCB Calcium Channel Blocker 120mg
when the private guy thought I would need 360mg but 180mg proved too much.
6. Bisoprolol reduced from 12.5mg to 2.5mg.
7. AF controlled now.
8. Energy improved.
9. PRADAXA reduced 110mg x b/d.
10. Energy more improved and light rash disappeared.
Perhaps you need someone too who is interested to help you.
Thyroidectomy and 12 lymph nodes taken. 2 affected with cancer.
Take 125mcg x 6days 100mcg 1 day at 5-6am under tongue Synthyroid. 1/2 hr - 1 hr breakfast. Level TSH 2.0-3.0. Success. No more trying to get down to suppression. Neck Scan again early February - now 2 years anniversary of operation. I refused radio-active iodine.
Take Care. I am 73years Sunday. My persistent AF I don't feel. JOY
If you feel exhausted -- you probably are. Sounds like you are torturing yourself with really high expectations and feelings of failure. I suffered a similar set back just before lockdown... and it was strange to discover that when life had to slow down so dramatically because of Covid, that I was now 'allowed' to pursue a less frenetic life! We all try to do too much, too fast, I believe. What also helped was a low dose of amitriptyline which really helped with sleeping and some pain. Took about 3 months to really hit in... so you have to be disciplined.... but can't recommend this medication enough. But mostly, be kind to yourself. Small goals, small steps to start with....
You obviously need motion and since it seems you cannot walk for any period of time, you should get a recumbent bike or stationary bike and sit on the thing while peddling. Watch a movie or whatever you like and peddle. Take a rest and get back on there.
Sorry you are having so many problems. The only way I beat my anxiety and lack of fitness was to give myself time and kept making small changes so that eventually I began to feel a bit more normal. perhaps a bit of walking then a rest, and repeat? Small steps are good if you can keep them up. Keep going! xx
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