The stigma of this condition is heartbreaking.... my experience x

[QueenYPea]

Hey, this is my first post.

I had a very abusive childhood and started to have symptoms at 13 years old. My doctor told me it was probably 'fibromyalgia' and sent me off on my way. I lived with the pain and fatigue and just did my best. Worked full time till I had me 3 children and then reduced my hours as each new babe arrived.
I found the courage at 36 years old to tell my family I was sexually abused intermittently from 9-13. They knew of all the other abuse but the sexual id kept locked away. This is when I flared bad and had to turn to my G.P for help.
After working in the NHS for 20 years I had to give it up 3 years ago as I wasn't able to do it anymore even though it was only 16 hours.

So bruised and fearful I enter the doctors office for help again and I'm met with a doctor doing her rotation, so not fully qualified but very nearly. I explained my symptoms and diagnosis and she said to me
"I can refer you to rheumatology but I'll tell you now they dread fibromyalgia patients coming in. I know this as ive just finished my 6 month rotation there. In fact in 20 years time I doubt there'll even be a diagnosis of this condition anymore. So I'll refer you but it won't be any use" In her opinion Fibromyalgia doesn't actual;;y exist and will be proven a fallacy. She told me to do exercise and not to focus on the pain.

This was a few years ago yet had such a profound impact on me I now dont trust professionals to help me. I haven't really seen a doctor since. I just try to manage the best I can, research and try to do the things I need to do. But my fatigue is so bad I actually dont have the energy often to do the things that would help. Even organising meal plans and shopping for the ingredients is too much.

I'm a confident woman believe it or not.... but having an invisible illness is so difficult to explain to people and to be embarrassed and shamed by a doctor has effected me so deeply. I'm sure its triggered some of my rejection issues too.

I just wanted to see if anyone else has had similar experiences.

Yvonne

 

[JayCS]

Hi Yvonne - actually yes, similar experiences all along.
Since you've written this on the general forum, rather than moan/vent you may be getting advice from others.
I'll just share my experiences and how I coped with them.
My abuse was more emotional. Working on it alone, with books, people online and therapists helped, so it didn't become/remain trauma.
And I was working 45-50h/wk 4 years ago, fibro brought that down to 0 for 10 months, re-starting I only got back up to 15h/w, then jab-triggered MCAS stopped me being able to commute and I'm now working online 10h/wk. For my loads of mental energy (despite a bit of fog) I communicate a lot online, mainly I spose "helping people" distant and near. As I've developed and nurtured a slow energy I've discovered gardening to get air & light (good for sleep), to shape and design (as I can no longer compose music). So these are my new types of work. Sometimes self-care the health researching and communication you've also mentioned are my #1, but at the moment I've been side-lining it, even tho I'm having to tackle 20 down to 10 new symptoms since January.
I've also had similar experiences with docs not understanding fibro or MCAS. An alternative orthopedist was convinced it was something hormonal, a sleep lab psychiatrist called it a trash can diagnosis, another orthopedist impatiently pressured me to go 'immediately' to a pain clinic, altho all other docs said I was active enough already and CoV was making it impossible to go 'immediately', my first rheum said I don't fit to fibro (meaning cliché I'm male, slim and fit), my 2nd a few months later diagnosed fibro, also calling it by a different name (which helped a bit, but didn't do all the symptoms justice), but helped absolutely nothing and later on the phone said fibro is no problem, very similar to what your doc said.
However what they said didn't hurt me much, because I've had docs since I'm a teen not understand my body, I know I'm the only expert for it, and docs are only my servants and hardly know anything. As I did study a bit of medicine, so know what they learn and how, and have repeatedly and now continually read studies, I know that they don't know. The difference now is they know I know and respect my knowledge and learn from me, and still support me with any ideas they can contribute, which is sometimes funny to see, cos they're not even listening to me, but at least heaping referrals and any meds I want to try on me, and also taking bloods as often and detailed as I want.
With my mainstays of exercises etc. for local pains and supps for everything all docs, practitioners and manual therapists are now out of their depth. So in that sense, like you I'm doing this completely alone - however luckily with the forums, once I caught on that they are very helpful.
Also they're human, and what they say may be on the spur of the moment. I felt snubbed by the sleep lab psychiatrist first saying it's a trash can diagnosis, but I didn't let it get to me and he actually turned out to be an incredible help trying to help me think my symptoms thru, support with work rehab. He and his successor and sometimes other docs and therapists I go to help me, by forcing me to explain my symptoms in a way they might understand, and not to overwhelm them too much - so short and to the point, which helps me understand, without them having to do anything. Like my GP the other day I only started with my main 2 new problem symptoms, night sweats and appetite/weight loss. Because I didn't explain that whilst my wife got CoV 15 symptoms, he held a short lecture that CoV isn't a problem any more, so it can't be that, but I jut humoured that and will be correcting him gently next time. Since I agree (as does my wife and 'the forum') that this stuff desparately needs checking, that's all that's important now.
So like you I don't trust professionals to help me, but I still continually ask them for favours and get them (50 docs in my first 1.5 years btw). I have one psychologist (after 3 others were helpless) who really knows where I am coming from and am, also knows others with fibro. I use her to make sure everything I'm doing is optimal, even little things like relationship stuff, which can make me nervous if I can't touch base with her, but hasn't been necessary for moths, praps almost a year.
At the moment I do weirdly have energy, but the exhaustion is much stronger, so I still need to household well (all the more actually) and self-care is #1, continually simplifying so that I can get the important things done.
I don't have changing meal plans, I'm glad when I can get some of my 50 foods into me at the "right" time in the day as possible, which isn't easy, all my food is simple and unprocessed, takes only minutes to prepare, even if I cook. Felt like Brussels sprouts yesterday, but I only like them fresh, which is taxing, so I calculated preparing them over a longer time, task-switching at the table - but they were only 12 big ones in a good state so my wrists didn't suffer at all.
And buying food is a matter of 10-15 minutes, plus 2x5' cycling there and back. My shopping list is in order of the aisles, I go when the shops are empty, some things I can put directly into bags and if I do have to wait at the check-out I do some stretching exercises. All perfectly optimized now. And yes - I (still need to) try to find the right moment with not too much exhaustion...
So all in all I'd still say very similar experiences, having developed tons of workarounds and basically keeping a very positive attitude using radical acceptance / ACT / mindfulness to be happy.
Even with 10 new symptoms and the doc suggestion it may be something malign (which doesn't concern me in the least) as my others don't, incl. my harmless(?) spinal tumor....
(Added to 100+ old symptoms and doing 100+ treatments every day for them, many in passing.)

 

[QueenYPea]

Hi Yvonne - actually yes, similar experiences all along.
Since you've written this on the general forum, rather than moan/vent you may be getting advice from others.
I'll just share my experiences and how I coped with them.
My abuse was more emotional. Working on it alone, with books, people online and therapists helped, so it didn't become/remain trauma.
And I was working 45-50h/wk 4 years ago, fibro brought that down to 0 for 10 months, re-starting I only got back up to 15h/w, then jab-triggered MCAS stopped me being able to commute and I'm now working online 10h/wk. For my loads of mental energy (despite a bit of fog) I communicate a lot online, mainly I spose "helping people" distant and near. As I've developed and nurtured a slow energy I've discovered gardening to get air & light (good for sleep), to shape and design (as I can no longer compose music). So these are my new types of work. Sometimes self-care the health researching and communication you've also mentioned are my #1, but at the moment I've been side-lining it, even tho I'm having to tackle 20 down to 10 new symptoms since January.
I've also had similar experiences with docs not understanding fibro or MCAS. An alternative orthopedist was convinced it was something hormonal, a sleep lab psychiatrist called it a trash can diagnosis, another orthopedist impatiently pressured me to go 'immediately' to a pain clinic, altho all other docs said I was active enough already and CoV was making it impossible to go 'immediately', my first rheum said I don't fit to fibro (meaning cliché I'm male, slim and fit), my 2nd a few months later diagnosed fibro, also calling it by a different name (which helped a bit, but didn't do all the symptoms justice), but helped absolutely nothing and later on the phone said fibro is no problem, very similar to what your doc said.
However what they said didn't hurt me much, because I've had docs since I'm a teen not understand my body, I know I'm the only expert for it, and docs are only my servants and hardly know anything. As I did study a bit of medicine, so know what they learn and how, and have repeatedly and now continually read studies, I know that they don't know. The difference now is they know I know and respect my knowledge and learn from me, and still support me with any ideas they can contribute, which is sometimes funny to see, cos they're not even listening to me, but at least heaping referrals and any meds I want to try on me, and also taking bloods as often and detailed as I want.
With my mainstays of exercises etc. for local pains and supps for everything all docs, practitioners and manual therapists are now out of their depth. So in that sense, like you I'm doing this completely alone - however luckily with the forums, once I caught on that they are very helpful.
Also they're human, and what they say may be on the spur of the moment. I felt snubbed by the sleep lab psychiatrist first saying it's a trash can diagnosis, but I didn't let it get to me and he actually turned out to be an incredible help trying to help me think my symptoms thru, support with work rehab. He and his successor and sometimes other docs and therapists I go to help me, by forcing me to explain my symptoms in a way they might understand, and not to overwhelm them too much - so short and to the point, which helps me understand, without them having to do anything. Like my GP the other day I only started with my main 2 new problem symptoms, night sweats and appetite/weight loss. Because I didn't explain that whilst my wife got CoV 15 symptoms, he held a short lecture that CoV isn't a problem any more, so it can't be that, but I jut humoured that and will be correcting him gently next time. Since I agree (as does my wife and 'the forum') that this stuff desparately needs checking, that's all that's important now.
So like you I don't trust professionals to help me, but I still continually ask them for favours and get them (50 docs in my first 1.5 years btw). I have one psychologist (after 3 others were helpless) who really knows where I am coming from and am, also knows others with fibro. I use her to make sure everything I'm doing is optimal, even little things like relationship stuff, which can make me nervous if I can't touch base with her, but hasn't been necessary for moths, praps almost a year.
At the moment I do weirdly have energy, but the exhaustion is much stronger, so I still need to household well (all the more actually) and self-care is #1, continually simplifying so that I can get the important things done.
I don't have changing meal plans, I'm glad when I can get some of my 50 foods into me at the "right" time in the day as possible, which isn't easy, all my food is simple and unprocessed, takes only minutes to prepare, even if I cook. Felt like Brussels sprouts yesterday, but I only like them fresh, which is taxing, so I calculated preparing them over a longer time, task-switching at the table - but they were only 12 big ones in a good state so my wrists didn't suffer at all.
And buying food is a matter of 10-15 minutes, plus 2x5' cycling there and back. My shopping list is in order of the aisles, I go when the shops are empty, some things I can put directly into bags and if I do have to wait at the check-out I do some stretching exercises. All perfectly optimized now. And yes - I (still need to) try to find the right moment with not too much exhaustion...
So all in all I'd still say very similar experiences, having developed tons of workarounds and basically keeping a very positive attitude using radical acceptance / ACT / mindfulness to be happy.
Even with 10 new symptoms and the doc suggestion it may be something malign (which doesn't concern me in the least) as my others don't, incl. my harmless(?) spinal tumor....
(Added to 100+ old symptoms and doing 100+ treatments every day for them, many in passing.)

Hi JayCS.
Ah, I didn't realise id used the wrong forum. But actually i'm ok with advice, even if its not what i'm looking for its still another person caring enough to respond so its enriching in any case.
Sorry you have experienced the same. With regards to cooking I forgot to mention that I have to cook for my 3 kids first, they are much more moderate in their healthy eating and wouldn't eat the clean diet i'm hoping for. So I feel exhausted by the time i'm finished with theirs.... I do try to cook for myself alongside actually which saves time but uses more mental energy with multitasking.
I really do believe diet is a key part of management so not being able to fully commit to that is upsetting.
I did start a celebration cake business from my kitchen and put an awful lot of energy into that. But this past week ive decided to close it down as it was too unpredictable. Some weeks id be doing way too much and others not much so my body was in constant flux. But I also volunteer, most of what I do is pastoral work supporting others. So that will be what I do for now to keep busy and to keep looking outward and not looking inward too much.
Can I ask, what is MCAS? Its probably obvious but my brain doesn't want to play this morning! lol
Thank you for answering my post.
Yx

 

[sunkacola]

Hi @QueenYPea , and welcome to the forum.

Actually, many of us here and many people with fibromyalgia have experience abuse as children, and/or as adults. It's a common theme, and I am one. From 9 to 16, so nearly the same as you.

I don't blame you for not wanting to see doctors after that experience. There are many people here and in general, who have fibromyalgia and who have experienced the brush off from doctors. Some, from many doctors over years. It's a very sad fact that not all doctors are up to date on fibro, to say the least.

You are absolutely right that diet is a very important part of managing fibromyalgia. And there are other things you can do as well. If you are interested, there's a post pinned at the top of the general forum that has a lot of ideas a person can try.

You sound as if you are managing pretty well, actually. But nothing makes it go away and like you I am often too exhausted to get things done. I love my volunteer work, but have to choose carefully what I do because I am not reliable to show up every Monday, say, because that might be a bad flare day. I have always been a very reliable persons so, like you, not being able to commit fully can feel discouraging to me.

So my volunteer work is one-on-one, helping people train their dogs or work on behavior modification. I can do that because the person is always understanding if I have to reschedule, since they are getting professional quality training for free. If there's something you could do as volunteer, working one-on-one without a set schedule, then you might find success with that. It works for me and doing volunteer work really helps my state of mind and how I feel about myself. I'm sure the same is true for you.

So, yes, I relate to your experience. And I welcome you to the forum and hope you find it useful and enjoyable. It's a safe place to come to because I and the other moderator do not permit any bad mouthing whatever. People are nice here or they don't stay.

 

[JayCS]

Hi JayCS.
Ah, I didn't realise id used the wrong forum. But actually i'm ok with advice, even if its not what i'm looking for its still another person caring enough to respond so its enriching in any case.
Sorry you have experienced the same. With regards to cooking I forgot to mention that I have to cook for my 3 kids first, they are much more moderate in their healthy eating and wouldn't eat the clean diet i'm hoping for. So I feel exhausted by the time i'm finished with theirs.... I do try to cook for myself alongside actually which saves time but uses more mental energy with multitasking.
I really do believe diet is a key part of management so not being able to fully commit to that is upsetting.
I did start a celebration cake business from my kitchen and put an awful lot of energy into that. But this past week ive decided to close it down as it was too unpredictable. Some weeks id be doing way too much and others not much so my body was in constant flux. But I also volunteer, most of what I do is pastoral work supporting others. So that will be what I do for now to keep busy and to keep looking outward and not looking inward too much.
Can I ask, what is MCAS? Its probably obvious but my brain doesn't want to play this morning! lol
Thank you for answering my post.
Yx

Ah, I wouldn't say "wrong" (sub-)forum, I was just pointing out to others from your finishing line that you might not be looking for advice, as you'd chimed in similarly on a recent thread. But then all is well.

Ouch, cooking for 3 kids!!! Quite a different matter. I'm happy when on a good day I'm able to play with my grandkids for 30-60', that's it... I completely understand that exhaustion and your multi-tasking problem. There'll be workarounds, there always are, but difffffficult. I taught my kid to make buttered bread themselves at the age of 3 and to eat pretty healthy.
Yeah, pastoral work is better to calculate, trying to serve "these unpredictable customers" isn't at all.
Since talking is a lot of strain for me, I try to do as much as possible online. Since others find mails more of a strain than talking, we often agree that I write, then they talk me thru what I've written and I make notes and so keep my talking down.
No worry, MCAS isn't obvious at all, it's mast cell activation syndrome, which has allergy/histamine-type reactions (even anaphylactic shock for some) to all kinds of triggers, like foods, excipients, chemicals and stress, despite not being "real" = measurable allergies...

 

[Auriel]

Hi QueenyYPea, welcome to the forum ️ yes I've had similar experiences, people treating me like there's nothing wrong with me (people don't understand, just because they can't see anything , it doesn't mean there nothing there) plus we have to push ourselves or nothing would get done! people can't see arthritis either (though R.A is more visible), but somehow, Fibro sometimes has a bit of a rep for being imagined or, even worse, a mental illness! The 1st Dr.i went to see at the hospital about it told me it was in my head! (I thought he meant it was connected to my head! I take things literally) but he meant I was imaging it! I felt so ashamed, it took me years to see another 1 (I thought I had bone cancer cos of the pain) also raised by abusers (I come from generational abuse, I was the scapegoated child of a narcissistic family (all narcissistic family's need a scapegoat to deflect and project on) ps I like your hair, (it's hard to keep blonde hair healthy looking, well I found it hard anyway )

 

[Nan]

Sorry you have an unresponsive dr. No help at all try to see another dr. You sound like fibro symptoms. Take care. Good luck. Nan

 

[Calli]

Yvonne, I can relate to most everything here that you wrote. It’s truly a challenge for us. Pain management just wants to do back injection to make money. Won’t write an RX especially for someone with Medicaid now. It’s not my/our fault.