Like a fool, I've gone and talked mys... - Fibromyalgia Acti...

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Like a fool, I've gone and talked myself into graded exercise therapy.

Alanna012 profile image
14 Replies

So I've been having a really, really tough few weeks, - well months actually - but last few weeks I've been mostly stuck in bed unable to perform simple cleaning tasks or even bend down and put the washing in the machine without experiencing dizziness and panting heavily when I stand up again and I haven't gotten out the house for at least 2 weeks, which is bad even for me. Wednesday I turned over in the bed and was hit with massive pain and I just cried from the fatigue as it was 10:30 and I couldn't move. My house is a tip. The garden is crying out for some help, I'm the embarrassing neighbour with the neglected overgrown weed patch.

And nothing is going to get done. Although I will say today is ironically a better day energy wise.

I have several other co-morbid health conditions including severe allergies (urticaria and angioedema) that keep going on and on. And when I'm tired and try to push through, the symptoms surge with a vengeance. Que swelling face.

Today like an idiot who doesn't know better, I ring the GP just to talk through whether I can adjust my meds, and how to add iron (since I'm reacting to that) he admits he doesn't understand Fibromyalgia (but to be fair was ernest in listening. Which I admit doesn't always happen).

I didn't think properly about what I was phoning for, I think the overwhelming exhaustion meant I was confused. Anyway I get offered talking therapy and dreaded graded exercise!!!

And I couldn't say no, as I was asking for help. I really now don't know what to do. If I don't go I will be labeled as uncooperative. But I am terrified of the consequences of trying graded exercise.

In the past I have tried keeping a very basic exercise routine, walking, really basic pilates...I've paid for subscriptions, and during good weeks I'm stupid and try and do exercise vids on YT. I always pay for it. Always. I can never keep it going, even if I manage it.

I suppose getting out everyday would be good however...but I just am in a hugely inflamed and fatigued state.

What to do? Has anyone here benefited from GE? I have visions of being made to run on a treadmill.

14 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator

Graded exercise can be very beneficial if done correctly and that you have a starting point that is low enough that it will not trigger a flare or significantly increase pain levels. You may experience some additional pain, especially if you are using muscles that are not used to the activity

A few years back I trained over a period of 9 months to do a 5k for the charity. I started with doing 2 minutes on the treadmill, and gradually increased on a weekly basis (at the starting point I could walk about 5 minutes, but I started at a lower level than what I could do)

The aim is to have an activity level you can achieve on all days, and try to avoid doing more on a better day

Alanna012 profile image
Alanna012 in reply to Hazel_Angelstar

Thank you so much for replying!

So it your case, you find it has worked, that makes me slightly less apprehensive, as I know G.E.T is controversial and was concerned will make me worse.

Hazel_Angelstar profile image
Hazel_AngelstarAdministrator in reply to Alanna012

GET is more controversial for people with ME as it can make their symptoms worse

Exercise /activity has been found to be one of the most beneficial things you can do for Fibro (although I appreciate that when you are in pain sometimes the last thing you even want to think about is exercise)

Alanna012 profile image
Alanna012 in reply to Hazel_Angelstar

Thanks, again! It's the fatigue element that worries me. At one time I could get about, but with pain. I would say pain and unconfortable peripheral sensations were the dominant symptom. I still attended university and was able to do housework with effort, travel etc. As time went on, the more I did, then the tiredness gave way to more and longer laster lasting episodes of extreme fatigue. Fatigue is now my dominant symptom and if I push through the fatigue I get the pain. Some days I just get pain ..I push through that I get the fatigue!

Before this latest onset I had about 2 months of feeling almost normal although having big flare of allergy. And that was pretty shocking and I was overjoyed, I cooked, baked had the house sparkling. Then I relapsed. And then just before December I caught flu and I have not been anywhere near managing.

When I've explained this again and again to Drs I am not understood. I just get told it's fibro and my doctor has refused me an M.E consult. Saying chronic fatigue is part of everything so my concern is explaining that, and being able to stop when I need to.

I would dearly love to be able to get put more so I have competing feelings. I will just have to try it and see I guess!

NannyNooNoo profile image
NannyNooNoo

I have fibro as well as RA, OA, underactive thyroid and bursitis. I was advised to have a graded exercise plan by my GP, but she couldn’t advise where 🤦‍♀️🤦‍♀️; I’ve been out in the NHS Physiotherapy waiting list, which is very long.

I read The Painfree Mindset, which made a lot of sense; from there I’ve made slight alterations to my diet (don’t stick to it rigidly though 😂), and I started to go to Toning Tables. The tables support the body, and the exercises are, effectively, graded, as they’re gradually built up. If there’s anything you can’t do, or is uncomfortable, they find an alternative. I’ve been going since July, and have lost a few inches and a few pounds, my mobility has improved. But above all, my confidence that I CAN do these things has made a huge difference. I have the odd occasion where I cancel/rearrange my session because of the pain, but generally have 2 sessions a week,

Alanna012 profile image
Alanna012 in reply to NannyNooNoo

NannyNooNoo thank you.

Like you, I have a lot going on, so worried. But reading your experience, with all the other conditions you have to deal with puts my mind at ease, much appreciated!

Purplebluebell profile image
Purplebluebell

Hi, all I can say is give it a try. A lot depends on who is leading the program. I work with Nordic walking UK and they have classes/walks for everyone. We see a people with joint problems, other co morbidities and long covid to name a couple of conditions.

Everyone is very supportive and welcoming. We have functional fitness classes which includes gentle exercises and sociably paced gentle walks.

I've had fybromyalgia almost thirty years and am considerably better in my sixties aside from the obvious aging problems. I have been in a wheelchair twice but am now able to work in this field as long as I pace myself.

Take care.

Alanna012 profile image
Alanna012 in reply to Purplebluebell

Thank you for your reassuring post, purplebluebell and it's amazing that you are out of your wheelchair, that's inspiring, because sometimes I think things are never going to get better. Also that's it better for you in your 60s. I have been super anxious about the possibility of symptoms worsening as I get older (early menopause runs in my family) and your experience makes me think not necessarily so. I truly appreciate you sharing.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I would ask too see another doctor as when I asked too be seen at the clinic for CFS I was not refused as it’s another avenue that could be checked , (Fibro and CFS are similar but with my CFS the chronic fatigue is the one thing that separates it from my Fibro. You also say doctor didn’t know much about Fibro and didn’t sound very helpful . I did change my doctor, thankfully he was brilliant , the one I had used for years came across as he really couldn’t be bothered too actually get me seen by anybody and just offered antidepressants 😂, it would be helpful too get checked properly in order to cope with day too day life. Differently pace yourself even on good days , but people can have both conditions , not easy sometimes but I think once I had both diagnoses it gave me a clearer picture, not saying you do have CFS but differently you need some answers, also a change of surgery if you feel your present one is not going too offer you the right help. Take care and hope you can press forward x

Jaycee18 profile image
Jaycee18

I’ve never been offered graded exercise, but for more than 15 years I’ve been doing Pilates and it helps me massively. I mainly do a class with a physio and she has great understanding of fibro and my body.

I had to stop during lockdown and the physical impact was huge and I’m still feeling it.

She tells me to grade my general pain at the start of a class and never do anything that makes my pain score increase by more than one, plus to not do any specific movement that hurts. There are exercises I either can’t do or can only do minimal repetitions of. But I generally leave the class feeling much better than when I started and definitely have better movement/flexibility by the end of it. I also benefit from the social aspect.

Give it a go, but listen to your body and flag if anything doesn’t feel right for you.

hightree profile image
hightree

I did a Pain Management course at a local NuffieldGym pre covid lockdown. I enjoyed it wasn't easy but at 12 weeks class was doing Circuit training 😮, (never did treadmill)surprised myself, post lockdown I still go swimming (when I can) which I enjoy, if you try and it's not for you at least you gave it a go, but you sound like your fatigue is high, Can you get any help with household Tasks ? only you know your own body, wishing you all the best 🦋💜

P808 profile image
P808

Same! I was diagnosed with Fibromyalgia in 2016. After years being stuck in a cycle of move, crash and burn, my therapist recently had me look into ME/CFS and specifically Post Excertional Malaise. As mentioned above, ME shares similarities and can also overlap with fibro. It helped me understand the cycles I go through, how to bank my energy and a push to find a program and reintroduce exercise safely. With fibro exercise helped the pain and mobility for a bit, but I always crashed hard. Now I have hope that I can still have fitness in my life but change what it looks like. I’m on a mission to find someone that can help. Be kind to yourself! You’re not a fool, you’re trying to live as best you can with what you’ve been dealt 🫶🏽

Alanna012 profile image
Alanna012 in reply to P808

Thank you P808 you sound exactly like me, right down to the crash and burn. I think I need to push G.P to investigate. Right now they seem to think I am lying about the depth of exhaustion I am experiencing.

may61 profile image
may61

was diagnosed with Fibromyalgia several months ago I am retired and have been going to gym 3 times a week for several years and do find I feel looser afterwards until next day ,stiff as a board.But find paracetamol usually helps and b12 and have also added magnesium as well It working pretty much at moment but good and bad days Think the magnesium is very key cos friend of mine has it in her family and once she started on the magnesium quickly improved She a hairdresser and could barely walk until she added the magnesium Worth a try

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