ME/CFS sufferer recently diagnosed with Fibro - new to forum, wanted to say hello

sleepytrex

New member
Joined
Sep 6, 2021
Messages
8
Reason
DX CFS
Diagnosis
10/2016
Hey - was diagnosed with ME in 2016, just had a diagnosis of fibromyalgia as well. At the time of my ME diagnosis I had never heard of fibromyalgia, and was focussing all my efforts on trying to keep my career, plus we had a baby on the way, so I never really stopped to consider why I was in so much pain all the time, particularly in my feet, knees, hips and back. About 18 months ago my wife persuaded me to visit my GP to tell her about the pain I experience, which then started the long process of receiving an official diagnosis of fibro, which I got a few weeks ago. I'm being referred to a pain clinic and the rheumatologist has also suggested to my GP that I consider anti-anxiety medication for the pain (the name escapes me).

I ended up losing my job as a teacher after 2 years of struggle with both my own body and with HR at the school, which was a pretty horrible time in my life and has left me with some PTSD. I'm pretty much bedbound now, and spend probably 98% of my time in bed. I can still manage short drives and the odd very short walk with my 2 year old daughter. My wife has become my de facto carer and provides the vast majority of the childcare.

After being initially misdiagnosed with depression and work-place stress, I was placed on increasingly larger amounts of sertraline, which, alongside being unable to exercise, caused my weight to balloon. I also get ravenously hungry during my crashes, and crave carbs of any kind. Prior to becoming ill I ran half marathons and ran about 40 miles a week, so never had to worry about what I ate. I always used to get people commenting on how skinny I was and how I should eat more. Not anymore!

I had a really good period last summer where I was even able to start yoga, which was a huge step for me as even mild physical exertion causes me to soon begin to violently retch. I also went vegan, and as I wasn't having to put all of my willpower just into getting through each day, was able to concentrate on losing weight by being incredibly strict with my food intake. I also wasn't feeling ravenously hungry all the time. I managed to lose over 4 stone and, although I had to be really careful, I felt like I had reached a stand-off with my ME/fibro. I started to feel good about my appearance again and was able to do more things with my daughter, like visit the park.

Boxing Day 2020 I had my most severe crash since my first initial crash and it hit me like an absolute sledgehammer. I had been very careful not to overdo it over the Christmas period and can't really point to anything as the cause of my crash, although I rarely can pinpoint one thing. Even visiting the bathroom was causing me to violently retch, and I was in so much pain from the fibro that it often caused me to burst into tears. My knees felt like they were on fire and wouldn't function properly (I fell down the stairs twice) and my feet felt like they were constantly cramping. I struggled to fall asleep at night due to the pain. This continued every day until about April of this year, when things started to ease up very slightly, although this is still the worst I have felt in years. Mentally it was incredibly difficult for me, and a couple of times I've told my wife that I didn't want to go on living anymore. I'm not depressed, it's just that this condition is so incredibly depressing. I've also slammed on all of the weight again as 'the hunger' came back with a vengeance, plus I haven't been able to do any exercise and have been stuck in bed all day.

I've shied away from forums after some initial bad experiences. People offering advice, such as eating this vegetable or taking that supplement or trying mindfulness or yoga or whatever it might be. I've tried pretty much everything, including CBD, going vegan, taking daily vitamin supplements, mindfulness, meditation, yoga (when able to, as even chair yoga is often beyond me). When I've explained that I've tried so many things and they just haven't worked for me, I've faced a lot of people accusing me of being a victim and not wanting to get better. This could not be further from the truth. I would love to be able to go back to teaching, which was my vocation and something I was bloody good at. I would also love to be able to take some of the financial burden off my wife, and do all of those things I want to do with my daughter but can't.

Anyway, if you're still here thanks for listening, and although I can't really offer any advice, I at least understand how debilitating and depressing this condition is for you. I hugely respect anyone struggling with this condition just for getting through each day and dealing with all the BS that comes along with it.
 

GrumpyGit

Active member
Joined
Jul 29, 2021
Messages
51
Reason
DX FIBRO
First of all, welcome to the forum. Secondly you've come to the right place, we all suffer together, but we do share hints & tip on so many different things, including pills, potions & techniques, but that's all they are.. hints & tips. Everyone is different & no one expects anything of anyone.. except that you come here & unload if/when you have to!

people accusing me of being a victim and not wanting to get better.

You know your body & what you don't know now, you'll learn as you go along.. we all are, some more successfully than others but that's why we're here. And these people are kind of right, we are victims (of something we have no control over) but we are also fighters. The fact that we are still here day after day fighting this thing is testament to that.

Anyway I've spouted enough bollocks for now. Glad you popped in.. Make sure you stick around, someone better qualified will come along & type something really good & then you'll have to stay! ;-)
 

sleepytrex

New member
Joined
Sep 6, 2021
Messages
8
Reason
DX CFS
Diagnosis
10/2016
Really appreciate the reply and the kind words. My post came off a little more confrontational than I intended and I couldn't find a way to edit it. What I was trying to say is that I've been in forums and groups before where people were very judgmental of each other. For example, one person posted about how she had found drinking fruit smoothies every morning to be life changing for her ME/CFS. A member of the forum, who was wheelchair bound, replied that she doubted smoothies would work for her but was glad they were helping. The original poster then accused the wheelchair bound person of being a victim and not wanting to get better. Similarly someone was posting about how yoga had helped them and when I replied that I was unable to do any physical exercise at times, even chair yoga, I was told that I had a victim complex and surely I could do some exercise. That kind of thing! Glad to have somewhere to vent, things have been tough lately.
 

GrumpyGit

Active member
Joined
Jul 29, 2021
Messages
51
Reason
DX FIBRO
No explanations needed & definitely no judgements here.

As for the exercise thing.. If you're having a bad one & can't do anything then going to the bathroom could be considered a form of exercise. So maybe they were right.. You were capable of exercise! You just never considered that even the basic tasks such as ablutions & reaching for the kettle (which are usually a breeze) are sometimes mammoth mountains to conquer, but are surmountable!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,466
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Really appreciate the reply and the kind words. My post came off a little more confrontational than I intended and I couldn't find a way to edit it. What I was trying to say is that I've been in forums and groups before where people were very judgmental of each other. For example, one person posted about how she had found drinking fruit smoothies every morning to be life changing for her ME/CFS. A member of the forum, who was wheelchair bound, replied that she doubted smoothies would work for her but was glad they were helping. The original poster then accused the wheelchair bound person of being a victim and not wanting to get better. Similarly someone was posting about how yoga had helped them and when I replied that I was unable to do any physical exercise at times, even chair yoga, I was told that I had a victim complex and surely I could do some exercise. That kind of thing! Glad to have somewhere to vent, things have been tough lately.
I have just developed thick skin. If someone accuses me of not wanting to get better, that is the last time i ever talk with them about my physical issues, and may very well be the last time I speak with that person at all, but I don't get upset about it the way I used to at first. Someone who acts like that is just suffering in their own way and they are being cowardly in taking it out on someone else instead of taking care of their own problems or trying to be supportive to others. If people were to act like that on this forum, they would be warned that this is not the kind of thing we do here. Not everything works for everyone and anyone who thinks they have found The Cure should be making millions with it. If they are not, then they're a phony. There is such a thing as a victim complex. But most of us who have fibro don't have that; we just have a problem that we are doing our best to deal with.

I think it helps to keep in mind that some people are so fearful that they put down other people and call them weak or victims when they are ill, because by doing that they can tell themselves they are strong and therefore it won't happen to them. They are wrong about that, but there's no point in even engaging with them at all.
 

sleepytrex

New member
Joined
Sep 6, 2021
Messages
8
Reason
DX CFS
Diagnosis
10/2016
All very true, and all very wise statements. I'm still working on the thick skin; I think that even though it's random comments on the internet it still hurts, because I feel as though fellow sufferers should show a greater understanding. I can excuse ignorant comments from the uninformed, but it's much harder when there's no excuse.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
625
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I can excuse ignorant comments from the uninformed, but it's much harder when there's no excuse.
Hehe, I'd think these comments are even more ignorant and uninformed - since misinformed - than the uninformed.
Or self-absorbed half knowledge is worse than not knowing anything.
I like Grumpy's spouting bollocks - not ;-) - about trying to take what they say constructively first ('sort of right'), genuinely considering and then partly or completely de-constructing it (no!). Ideal would be to turn the tables on them by making it transparent that what they are doing to others is not constructive but hurtful. It is not constructive even it might be true to psychologize others. With smoothies & yoga? What rubbish.
Actually, before I started, I was pre-supposing this kind of thing might happen a lot on forums, esp. health, but have been pleased to find it doesn't, the mods take great care, so sorry that it happened to you so early on and you got the wrong impression and praps missed out a lot of help. Cos listening and testing things suggested on the forums has actually started to help me considerably in the last few months, after docs cdnt, then friends' good ideas put me under way. It also helped me refine mindset, symptom & treatment tracking & trigger hunting.

BTW - Must be so exasperating that you can't see any triggers much. I think it's one of the main things that empowers me & my successes, so if I didn't have that I'd prolly be where you are... I really hope you can find more starting points soon... Especially the retching: What is that?
:unsure:
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
269
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Sleepytrex, well I’m glad I didn’t join “that” forum, having fibro’s debilitating enough without victim blaming from other sufferers who should really know better , you won’t get none of that here I can assure you, we’re all in one big lovely boat sailing through the rocky seas , congratulating each other’s momentary reprieves when we get something done +having some funny banter along the way, welcome aboard 🍺
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
269
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Sleepytrex, I hope you’ve got a good dr, if not just find another one, life is too short to live with health issues of different types which could be sorted out or improved, I’ve swapped I don’t know how many drs over the years + seen private practitioners + now I’ve got a good one ( and she’s funny too!) but I’ve picked up and put down sooooo many drs over the years it’s been like working on a factory conveyor belt, don’t give up + don’t suffer ( not in silence anyway) 👌🏻
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
269
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
So true sleepytrex 👍🏻💫🌟
 

MsRant

Member
Joined
May 7, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
10/2005
Country
US
State
VA
Hi Sleepy, welcome.

I didn't find it confrontational, sadly, just typical of what we deal with on the regular. Fibro is highly personalized, NO ONE can say otherwise, and that is something that we each have to truly grasp and accept. It is not easy to do that. It would be SO wonderful to say this is gonna help, or this is/isn't fibro. We don't get that luxury.

I have found this forum to be a good, accepting, positive one, where I can talk about my fibro and be accepted, I hope you find it the same.
 
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