Not a newbie! 34 years and soldiering on!

[Mr Bee]

I've suffered personally with this disease for the last 34 years and the only way to put it in real terms is it's a living hell. I wouldn't wish this disease on anyone not even Mr Hitler (deceased 1945).

The fact the pain of 'denial' with this disease is a formidable one. Is it a mental disease? No. Why?
Because as the patient suffers with this disease it gets progressively worse. All through this suffering I have personally been very resilient to it. I eventually stopped caring about it many years ago. I've been through all the mental hardships one can get with it and have safely come through each stage. How? Because, I'm like my Mother in many ways. She is so resilient. She has had cancer twice and at 89 her Kidney's are now failing because of Diabetes. She has always smiled and laughed everything off. No matter what you throw at my mother she will always see the bright side of things. I'm much the same but I first see the negative things then progress to the positives after a while. Doctors call that depression. It's not! It's a primary defence mechanism. I no longer suffer with this because I now accept that this world is totally inept. It's full of dillusionaries which include most Doctors. Most Doctors primary goal is wealth. Therein ends the issue with Doctors.

As far as I'm concerned most Doctors have gone into nursing not because of Empathy but because of stability and status. That status is eroding fast as many Doctors today are near useless in the care of others. They go to work to try and help but after an hour they're worn down by the sheer multitude of ill people. My sister is one of the most highly skilled nurses in the NHS. She has on occasions helped me through some of the negative comments made by these silly people posing as Doctors.

I have been suffering with ___________________ (you won't want this disease) for the last 8 years which has been like going through 4 World Wars. Doctors haven't yet made the diagnosis but I have for over a year now. They simply aren't interested and seem so inept as to the reasons or causes. I can help with that. It happens simply because of the inactivity, and bad food habits of a human that suffers with Fibromyalgia or similar issue. So what does an old fella like me advise?

This: Minimum of 7000 steps per day (for the rest of your life) if you can... Don't go father than 15000 everyday as you will start to damage yourself. That doesn't mean you cannot do 30000. You must eat super healthy depending on your race and where you originated. Other than that I cannot help you any further as those are my primary instructions for all my fellow sufferers of Fibromyalgia and similar diseases.

Good luck in your future endeavours and stay happy by forgiving the idiots that know nothing, but know "everything"...

There have been no cures for any sufferer I have met in my 34 years of living with this disease.

 

[sunkacola]

Hello Mr. Bee: I have taken the link out of your post. Posting outside links is not permitted on this forum. If you want to direct members to something online, instead of posting a link please tell them what to Google in order to find it. Thank you.

 

[Mr Bee]

Please remove post!

 

[Auriel]

@Mr Bee I hope you stay the forum for a very long time, l liked reading your post and I agree some drs don’t seem to care and it seems like they’re in it for reasons other than helping people, some have come across as extremely narcissistic and in the beginning some tried to make out I was imagining my symptoms because they didn’t know what fibro was and money and prestige could well be a factor for choosing the profession

 

[Mr Bee]

Thanks again for your interest Auriel. I have spent more than 20 years researching my illness. To date I have 18 issues and you can guess what the doctor is doing about it. For the past 9 months I’ve been suffering with the inability to pass stools. I’ve used at least a hundred suppository’s to past a little. My only way to survive at the moment is to eat then starve myself for at least 3-7 days at a time not to gain to much weight and to not create a massive backlog.

It happened in 2013 August when a pain overnight was awful but I never went to the hospital as I cannot be bothered with doctors anymore as they literally are either overworked or just too stupid to listen.

There doesn’t seem to be a way out of my purpetual misery. It seems all a joke to them. My whole purpose of being on this forum was to help all fellow sufferers not go through what I’ve been through!

My point is that everyone suffering with this disease has to stand up for themselves and be counted. If you’re the timid type you will need to grow a pair.

This world is pushing us severe sufferers down the proverbial. So start making the doctors lives a flippin misery because that’s all their going to do for you.

Family, friends, countrymen and fellow sufferers are generally not understanding either. So what are we to do when all of them think were faking it. Reality tells us their all complete morons.

If they continue to believe that everything has to be visible then what happens when they suffer. They generally commit… to something else.

Real people sufferer immense pain. Reason is they are the toughest in society and the world wants to keep them down.

On another note I asked for this post to be deleted. That was a violation of my rights not to delete it. So now I want it left here so that everyone understands that it’s a serious problem being ignored, which is the worst feeling of all in life.

At the end of the day all we ever get is ignorance in our face!

 

[Jemima]

Mr Bee,

I'm so sorry that you felt ignored - please remember that this is a volunteer forum, and all the people here are also struggling with their health. Your post was very inspiring to read, but didn't ask any questions, so probably many people read it but didn't feel the need to answer! Lots of people come here to read but prefer not to actually talk. You might have helped lots of them without realising.

For your more recent challenge, have you looked into magnesium supplements? Certain types of magnesium - like magnesium citrate - have a powerful laxative effect, and magnesium is also a potential fibromyalgia treatment. Could be worth a go if you haven't tried already!

As for the need to "grow a pair" I'm going to assume that my ovaries count, because I'd rather not start swinging!

 

[Mr Bee]

Ovaries accepted!
I have no questions of Fibromyalgia. I don’t know it all but I’ve been through a lot of issues. Problem is those that listen have to be retold so it’s functionally pointless telling or expressing to anyone other than a fellow sufferer.

 

[Jemima]

Ovaries accepted!
I have no questions of Fibromyalgia. I don’t know it all but I’ve been through a lot of issues. Problem is those that listen have to be retold so it’s functionally pointless telling or expressing to anyone other than a fellow sufferer.

I appreciate that

I agree - talking to others can sometimes feel like banging one's head against the wall! But, everyone here knows what you're talking about, and I think people who've had fibromyalgia for a long time have so much to offer those just starting their journey. Your presence is very welcome!

 

[Auriel]

I’m agreeing with jem’s, that’s exactly why I said I hope you stay on for a long time, I only read that you wanted the post taken down after I sent the reply and really couldn’t understand why you wanted to? + if I grew a pair I think I’d be scared and confused so for us girls I’m assuming it means get our feisty on, which we do sometimes when it’s necessary ️

 

[sunkacola]

On another note I asked for this post to be deleted. That was a violation of my rights not to delete it. So now I want it left here so that everyone understands that it’s a serious problem being ignored, which is the worst feeling of all in life.

Not sure what rights you think have been violated here. There is no bill of rights for this forum. As a moderator I will make sure no one gets away with harassing another member, no one will get insulted or put down without some reaction from me. I will remove posts that are offensive or break the forum rules.

If you want to delete a post you made, you can do that yourself, you don't have to ask us to do it.
And Jemima is correct, we are all fellow sufferers and volunteers and cannot always do what someone wants us to do immediately. In this case, I saw that post you made. but you did not say which post you wanted deleted, and even if I had known I knew you could erase it yourself, so I didn't think I had to do anything.

Having said that, I appreciate your posts and welcome you to continue being here. I understand the frustration you feel, and while I temper how I think about it somewhat, knowing that not everyone who doesn't understand is a moron, and wanting when I can to educate those who are ignorant if I can (if I have the energy to do it!), I can relate to what you have said. This forum is for posts like yours.....so that we know we are not alone, and that others can understand even if they are not there in person. I hope you get some help and support by being here.

 

[Creola17]

I'm with you Mr.Bee, doctors are worthless. I think because of my fibro my doctor ignored how much pain I was in. For a little over a year I was peeing every 5 minutes and nausea and PAIN. Our last appointment I tried to tell her how I couldn't take the pain. Three fricken times she said "I told you you have MILD arthritis in your hips. I finally gave up and went home. Couple days later in the middle of the pandemic I had to go to hospital. Ended up removing 14cm kidney stone. I hate her and will never see her again. So no doctors for me. Don't know how I'll get my thyroid medicine. Oh well.

 

[Mr Bee]

Three fricken times she said "I told you you have MILD arthritis in your hips. I finally gave up and went home. Couple days later in the middle of the pandemic I had to go to hospital. Ended up removing 14cm kidney stone. I hate her and will never see her again. So no doctors for me. Don't know how I'll get my thyroid medicine. Oh well.

I feel your pain. They instinctively think you have to just suffer never thinking that YOU might have something else going on.
Last Friday I had 2 slices of Wholemeal Hovis bread (Tasty Version) Medium sliced. My friends on Saturday when we went to Llandudno said I was awful quiet. They all had fish and chips I was mega hungry but I can't eat it! I eventually had a BLT from Sainsbury's Tasteless and awful to say the least. I started going further down in my misery. Got home had a Kale & Egg... Never bothers me actually feel better when eating it. Had two pieces of the same toast and boy if I did. Mega pain, serious fogging, suicidal thoughts and deep with it. Couldn't get out of bed until this (Monday) morning. Same old crap as usual, people think I put this stuff on to claim benefits. They wouldn't last as long as I have. I have a life long hunger to get to the end so suicidal thoughts are a regular occurrence with me. I've been in so much pain for years that I'm certain it's the Devil himself causing it!

Definition of Doctors: Nothing but the greedy, hoping for the easy life but now Covid's having some fun they complain that they have too much work. I call bullcrap. They cannot have an easy life from now on as the world falls deeper into disarray. Covid 19 will not be the last thing as malnutrition next on the cards of life. Says so in the Bible if anybody's bothered to read it.

 

[Auriel]

@Creola17 i also go back a fore bathroom a lot especially at night and I’ve not even drunk very much (sometimes I just feel I want to go, it’s weird) I get your annoyance I’ve had some nightmares of doctors, if you can, please change to another dr to get your thyroid meds so you won’t go in a thyroid coma or collapse (I was narcoleptic and my thyroid was sore my past lady dr told me it was anxiety?) I went private had a scan showed I had thyroditis and autoimmune thyroid, it was in a bit of a mess, please don’t go without medication 🌤

 

[Momzilla]

Hi Mr. Bee, I agree the health care industry has really gone down hill especially since covid. The only person I really have to rent to is my mother, who struggles with empathy. Her response is always a scolding about how I need to see a doctor. I tell her, she id love too! Who should I see? Sometimes I believe we could survive on just empathy. I feel i could see the same doctor my whole life even if they never helped me, as long as they had empathy. Ive been in customer service for 20 years and the most basic tool is empathy. Its not rocket science.
I've seen a couple amazing doctors but unfortunately can't use them. One did my lung surgery so he can't help and the other diagnosed my daughters heart issues when I was pregnant after a midwife at the same facility literally scolded me and said her heart was fine. (I didn't do anything other than go to a special sonogram place that tells you the sex of the baby early.. (the sonogram tech found the bad heart beat and had the owner call me to say i needed to be seen by my doctor right away!) The midwife freaked about how people shouldn't go to those special sonogram places and refused to see me.. Those places are legit with real technicians.. it not like i was getting a black market sonogram in an alley! I'm sure it's not easy for them either. (Doctors)
I believe I'll find a good one, but you have to have an extreme amount of free time. Which I don't have blah.
I've heard good things about restoring intestinal flora. Im sure you know all about that already. I find keffer helps me.

 

[Mr Bee]

I believe I'll find a good one!

It’s possible but I’ve only met 1 good doctor in over 100+. Mostly paid for by ex wife. He was exceptional. But that was for cancer. I never flinched at the thought of having cancer as that was completely nothing to what I’m going through every single day. It lik being told I have cancer every hour on the hour. Just waiting for God really.

I've heard good things about restoring intestinal flora. Im sure you know all about that already. I find keffer helps me.

It’s the most important thing to have to keep off the other issues that can come from being a sufferer of Fibromyalgia.

On God, sustains me every time.