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Fibromyalgia Action UK

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Trish04 profile image
16 Replies

Hi,

I joined this group around a year ago, but then found I didn't want to discuss FM as it was dragging me down at the time. I have logged on today and really found a benefit in reading and contemplating some of the posts, and have even managed the odd comment, so I thought I would post something myself.

Lovely to meet you all, virtually, as most things are this year anyway. Around three years ago I was enjoying long walks, went up Snowden and attended a gym 2 or 3 times a week. Suddenly, years of worsening fatigue, and then the sudden onset of pain and burning in arms and legs led to me jumping on the Merry go round of GP and physio visits and eventual diagnosis of FM. Now I have had to adjust my life so dramatically to cope with fatigue, pain and brain fog, life is completely different. I manage the odd dog walk with my husband, slowly, and pay for it for days after. Suffer pain in arms and legs but more recently in the chest (since covid in March) so all the scans and tests for that to rule out any nasties, but I think it will be another part of FM, as I have been told it can give pain in the chest. Has anyone else had this symptom please?

I am 50 in 2021, and I am so frightened by the fact that I will no longer be able to enjoy walks and keeping fit as it has deteriorated so much over recent years. Has anyone on here managed to maintain a regular fitness routine please?

Thanks you.

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Trish04
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16 Replies
Lovecavatese profile image
Lovecavatese

Hi, i am 49 and a half,( the half is important) :), I have asthma now too, it was news to me. What kind of chest pain, can you describe it?

Lovecavatese profile image
Lovecavatese

Cont... my fitness is no longer aerobic, typical jump up and down exercise, its now yoga based, this gives me muscle control to a degree and helps with some pain, this i do every day more or less, I do miss walks, just not upto it.

Trish04 profile image
Trish04 in reply toLovecavatese

Thank you for your reply, really helpful.

The chest pain is currently thought to be so called long covid, constant heavy weight across the chest, some days better than others, with shooting pain around the top right of chest, sometimes to the left also.

I have had breathing attacks too and been given an inhaler to help with these, although asthma is not diagnosed.

Awaiting final test results on CT to check heart to rule out anything serious before looking further at long covid treatment, which they suspect will include physio and talking therapy, but understandably, they need to have the pandemic under control before they have resources for the long term effects.

I did have the shooting chest pain before this year, without the heaviness, so my recent thinking is this has been exacerbated by the virus and will remain part of the FM symptom.

It's the first time I have spoken to anyone non medical about this, it helps to share and think further about the bigger picture.

I was also thinking of getting back to yoga, and would really like to get this in to my daily routine, thank you for reminding me of this, its helpful to hear it is a routine for you.

Thank you

Costochondritis seems to be common with fibro but it’s essential you get any other causes of chest pain ruled out. I had ECGs, a CT scan, X-ray and several breathing tests carried out at a respiratory clinic —- everything came back normal, even exceptionally good results on my lung capacity, yet I was tired and had chest pain. It was put down to costochondritis and I find heat and a couple of painkillers usually soothes it. Make sure your dr checks your heart and lung function and also that all your bloods are at optimal level, not just hovering around “normal”.

Cat00 profile image
Cat00

I do a lot of exercise, pre lockdown I would go to the gym everyday and do a HIT type class and would do a couple of kung fu classes a week (although that's not very aerobic). A pain specialist once told me you can be in pain or you can be fit and in pain, I chose the latter.

I have other conditions such as chronic migraines, and I have a 6 year old and a 2 year old so fatigue is a constant, by the time they are in bed I'm shattered and doing the housework and other things can be too much in the end. But my pain is less as long as I exercise regularly but unlike the other gym users I have permanent DOMS but I feel safer being stronger. I'm finding lockdown very hard as I don't cope with the cold well and the gym is shut everything's hurting now.

LisaSnow profile image
LisaSnowFMA UK Volunteer

Please don't feel about about venting, this pandemic situation is at its worst and we all should feel anxious, having fibro or not! I hope you and your hubby keep each other company and care for each other to stay safe!

Trish04 profile image
Trish04

Thanks all for your comments, really helpful. Yes there have been xray, MRI, ECG and bloods etc. all coming back good, just waiting on results of CT scan to check heart and arterial openings to complete the check on nasties before putting a maintenance plan in place. Interesting comment about using heat, I will try that, thanks.

Wonderful to hear you are doing lots of exercise Cat, and still have energy left over for children and housework! It sounds as though you have found the right balance to support you at a level you can cope, hopefully gyms will open again very soon as we need to keep hold of the things that make our lives easier.

I guess the key is to build up the exercise and don't push too far for where we are at this time. I have been walking this week and I wouldn't normally do so much, and at the moment I am left in too much pain to do any exercise. But once this pain is easier I will begin some gentle yoga....and will try not to over do it!

Just heard the Oxford vaccine is being rolled out which is great news. Stay safe everyone and happy new year!

Patdoyle profile image
Patdoyle in reply toTrish04

Can I ask what you had the MRI for and did it show anything

Trish04 profile image
Trish04 in reply toPatdoyle

Hiya, yes the MRI was actually due to a severe migraine attack, the version I have always had would look like a stroke on first glance but we know they are migraine and usually just go with it, but this one was particularly bad. The MRI was to rule out stroke and confirm the migraine diagnosis from around 10years ago, which it has done.

Thanks

Patdoyle profile image
Patdoyle in reply toTrish04

That’s interesting because I had an MRI 2 years ago because of severe dizziness and they said there was a small area on the scan which was a small stroke. I had never felt any stroke symptoms but the neurologist put me on a statin and aspirin. I have migraines too.

Cat00 profile image
Cat00 in reply toTrish04

Was that a hemiplagic migraine then?

Trish04 profile image
Trish04 in reply toCat00

Yes it was, been having them for around 15 years so usually get to bed at first onset and go with it. I generally dont get any pain. They have changed and worsened this year, including difficulty swallowing, and like a tension which scrunched up the face and right hand in addition to the usual lack of movement on the right side....hence this time around I asked for some help. But all okay, thankfully just another mutation of the migraine.

Interesting you have heard of this, do you suffer yourself?

Cat00 profile image
Cat00 in reply toTrish04

I don't have them myself but I'm that category or severe almost daily migraine so I'm in the test group for all the new meds etc and I have had one one migraine where they thought I was having a stroke but it turned out to be torticollis probably brought on by years of migraines distressing the muscle but they don't know really. I know people with hemiplagic migraine but they get the pain as well, I always worry about them driving incase it comes on while they are on the motorway.

Trish04 profile image
Trish04 in reply toCat00

Migraines are not fun at all, sorry to hear you and your friends suffer. I'm glad you are finding some help for them, as they can really disrupt your life and in addition to FM.

Midori profile image
Midori

One of the curses of growing older, even without Fibro, is the lessening of stamina. I have noticed my strength leaving me slowly this year, because I'm shielding and the weather is atrocious, so getting out for exercise is difficult. I'll be 73 in February.

I'm never going to make it up Snowdon, although in my youth I spent time in the area, as well as in Powis, hillwalking , climbing and orienteering.

Keeping fit under Covid precautions is very difficult. Trouble is, weight gain and muscle tone loss can be hard to remedy, just keep walking around as much as possible. Try a static cycle that you can exercise while sitting. (basically, just a frame with pedals) cost around £40.

Most pain I ignore, take Ibuprofen when I must, and I have a few CoDydramol for the direst emergencies, when my worn out knee decides to make a comment.

I'm an obstinate cuss, I won't let my body dictate to me.

Cheers, Midori

Trish04 profile image
Trish04 in reply toMidori

Thanks Midori, totally agree.

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