I am glad i found this forum.

Joal

New member
Joined
Feb 7, 2020
Messages
6
Reason
DX CP
Diagnosis
00/0000
Country
CA
Hi,my name is Joal,i am 61 and i have been having all kinds of symptom for years.Right now i am having eyesight problems,sinus infections,migraines,sore fingers,sore throat,neck pain,shoulder pain,hip pain,knee pain.I don’t have a diagnosis yet but i think this is it.I don’t sleep without a pill and i am on depression meds.I have also been having gerd,burning my throat.I also have intersistial cystisis,this is bladder pain.My intestines have just started paining me though,a combination of constipation and diarrhea plus my anus always hurts from a fistula.I am very sorry to unburden myself on you all but i am so happy that i am not alone in this fight.When i talk to my family i feel like i am always whining and anybody who really k me know that i am not lazy. I used to be the first one up and the last in bed and now i am always good for bed. I am always tired.Thank you for reading and fell free to comment.I will always be optimistic though.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
515
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Joal,
You can come here and complain if you want to; we all do that at times, and it's a good thing to let off steam when needed. Like you, however, I maintain a positive outlook on things the very best I can. I work at it. It's very important, because otherwise it's too easy to sink down into despair and that only makes the disease worse. I know - been there, done that. :)

You are definitely not alone in this, and I for one will be here for you as best I can. Talking to family and friends about this, I found, has to be kept to an absolute minimum. It doesn't help me to discuss it, and no one really wants to hear about it.

The hardest thing is people who refuse to understand that we are not malingering or making it up. But, what I am doing is simply removing those people from my life if I have given them enough time and enough talking about it that they have plenty of opportunity to understand and be supportive.

What I told one person: you don't have to do anything for me. You don't have to help me or listen to me complain, or try to fix me or anything at all. All I ask is that you don't actively make it worse. That person, by not believing me and by giving me a hard time every time I had to cancel something that was planned and so on, kept making it worse. And that person is now out of my life. The relief is wonderful.
 

Joal

New member
Joined
Feb 7, 2020
Messages
6
Reason
DX CP
Diagnosis
00/0000
Country
CA
Hello sunkacola,i am so happy to have a reply and to know that you absolutely understand what i am going through.I have always been a very positive person even though this condition has me in pain most of the time.My husband is my biggest supporter but many family members don’t understand at all.If you feel like venting i will be here for you,sometimes words are like meds ,somebody who understands.My husband is supportive but he does not understand.It’s true what you said about keeping it to a minimum with some people,they look at you and they space out.Thank you for caring.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
515
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
You are welcome. thanks to you as well, for being there!
 

Ahoppy73

New member
Joined
Jan 2, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
03/2018
Country
UK
Hi,my name is Joal,i am 61 and i have been having all kinds of symptom for years.Right now i am having eyesight problems,sinus infections,migraines,sore fingers,sore throat,neck pain,shoulder pain,hip pain,knee pain.I don’t have a diagnosis yet but i think this is it.I don’t sleep without a pill and i am on depression meds.I have also been having gerd,burning my throat.I also have intersistial cystisis,this is bladder pain.My intestines have just started paining me though,a combination of constipation and diarrhea plus my anus always hurts from a fistula.I am very sorry to unburden myself on you all but i am so happy that i am not alone in this fight.When i talk to my family i feel like i am always whining and anybody who really k me know that i am not lazy. I used to be the first one up and the last in bed and now i am always good for bed. I am always tired.Thank you for reading and fell free to comment.I will always be optimistic though.
Unfortunately all you have mentioned are all symptoms of Fibro some don’t experience all but the longer your fibro the more you will experience .. even though it seems to take us years to get an actual diagnosis ... but you CAN relax cos they all ARE symptoms .. and the sooner you do relax about it the better your symptoms will be ...the thing is Fibro is a condition where the brain is still getting pain messages where theres actually no pain , when the GPs say its all in your head it actually is , even though they don’t explain it very well .pain killers only work when theres a reason for pain , headache, earache, etc.. pain killers cannot attack nothing .. thats why they don’t work ... it’s hard to get a grasp of that .. we have to tap into bodies natural pain killer and the best is Endorphins but for us to release them we have to be ‘Happy’.. how can you be happy bout being in pain all day ???? .. you just have to .. but when you’ve mastered it .. it does work 👍 ..
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
515
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Unfortunately all you have mentioned are all symptoms of Fibro some don’t experience all but the longer your fibro the more you will experience .. even though it seems to take us years to get an actual diagnosis ... but you CAN relax cos they all ARE symptoms .. and the sooner you do relax about it the better your symptoms will be ...the thing is Fibro is a condition where the brain is still getting pain messages where theres actually no pain , when the GPs say its all in your head it actually is , even though they don’t explain it very well .pain killers only work when theres a reason for pain , headache, earache, etc.. pain killers cannot attack nothing .. thats why they don’t work ... it’s hard to get a grasp of that .. we have to tap into bodies natural pain killer and the best is Endorphins but for us to release them we have to be ‘Happy’.. how can you be happy bout being in pain all day ???? .. you just have to .. but when you’ve mastered it .. it does work 👍 ..
Hi there, Ahoppy............you state in this post that "pain killers cannot attack nothing .. thats why they don’t work ", which is a pretty big statement. It is simply not true that pain medication doesn't ever work for people with fibro. I have found that some pain meds work for some pain, others work better for other kinds of pain, some did nothing for me, and many others who have Fibro have the same experience. That is why I always suggest to people to do the experimentation to find out what works for them. For a very few, nothing works, but most people with Fibro find some relief with whatever pain meds work for them. I think it's a bit discouraging to people for you to say that pain medications don't work, and I would hate to see anyone discouraged.

Having said that, I will also say that you are correct in saying finding ways to keep upbeat as much as possible really is key to managing this disorder, and in my opinion is even more important than pain medication. Working with both of those things, and staying as physically active as you can, is what I think is the best approach. :)
 

Joal

New member
Joined
Feb 7, 2020
Messages
6
Reason
DX CP
Diagnosis
00/0000
Country
CA
Unfortunately all you have mentioned are all symptoms of Fibro some don’t experience all but the longer your fibro the more you will experience .. even though it seems to take us years to get an actual diagnosis ... but you CAN relax cos they all ARE symptoms .. and the sooner you do relax about it the better your symptoms will be ...the thing is Fibro is a condition where the brain is still getting pain messages where theres actually no pain , when the GPs say its all in your head it actually is , even though they don’t explain it very well .pain killers only work when theres a reason for pain , headache, earache, etc.. pain killers cannot attack nothing .. thats why they don’t work ... it’s hard to get a grasp of that .. we have to tap into bodies natural pain killer and the best is Endorphins but for us to release them we have to be ‘Happy’.. how can you be happy bout being in pain all day ???? .. you just have to .. but when you’ve mastered it .. it does work 👍 ..
Thank you for explaining this to me,actually i have the pain but i don’t understand this yet,i am learning.
 

emma

Active member
Joined
Feb 5, 2020
Messages
38
Reason
DX FIBRO
Diagnosis
01/2013
Country
UK
hi joal, I hope you feel less alone now, I find nobody understands it really unless they have it themselves, im always tired but force myself to stick to my morning routine, then I have a nap at lunchtime if I need one, hot bath and painkillers help me, but everybody is different, its hard to explain but I sometimes just try to ignore it and get on with what I want to do, sort of tell it to bugger off in my mind, I make sure I go to bed and get up same time each day even when exhausted I believe this is called sleep hygiene, also you mentioned having a positive attitude, that will definitely help you, it is still possible to enjoy your life, i do, its just different from people who dont have it, i explain it as my batteries dont last as long as other peoples !
 
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Joal

New member
Joined
Feb 7, 2020
Messages
6
Reason
DX CP
Diagnosis
00/0000
Country
CA
Hi Emma ,for me i have been sticking to my daily routine as best i can.We go out walking for at least half an hour when the weather permits but when we get home i am sooo tired i just want to go back to bed.My husband is really understanding though he cooks and cleans as best he can ,he puts clothes in the dryer and folds stuff.I’m very lucky..I love the way you explain to people that your batteries run out faster,that is a good way to tell it without really whining.You have a good attitude life is still good and it is doable but you have to pace yourself.Thank you for your reply.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
515
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Emma, I like your explanation using batteries. I will use that one as well, because as you say it says what you need to say without whining.

Some kind of daily routine seems like a good idea. I struggle with that, but think I should try harder to do that because it would probably help.

The worst thing for me is people who want me to make general statements about what I can and cannot do. Like: I can always do this or never do that. But that is not how this syndrome works! One evening I might be able to sit and watch a play or concert until 10PM but another evening I might fall asleep or end up in severe pain before the event is even half over, and there is no way to predict that accurately every time.

I had a partner who was like that, and who gave me a hard time every time I had to cancel plans. Which of course only made it much worse. So I no longer have that person in my life. All I asked was not to make things worse by getting mad or demanding, but when I gave lots of chances for that to change and it did not, I called it quits.
 

emma

Active member
Joined
Feb 5, 2020
Messages
38
Reason
DX FIBRO
Diagnosis
01/2013
Country
UK
hi joal, thank you for your nice reply, im glad youre husband is helpful , mine cooks the evening meal every night after work, sorry I couldn't have been more help, but there is lots of people on here who are more knowledgeable about medications and things, as I say I just use paracetamol , I think you call it tynelol? if I am correct about you being American. Anyway take care joal and hope to talk again, have a nice as day as you can x
 

emma

Active member
Joined
Feb 5, 2020
Messages
38
Reason
DX FIBRO
Diagnosis
01/2013
Country
UK
hi sunkacola, I say that about my batteries to my husband and father as they think its normal tiredness, we know different don't we? I know what you mean about one time you can do something and then you cant, sometimes I can watch a film with my husband , sometimes I can only watch half a film! and no of course you cant predict it , its not your fault you cant help it, I fell out with a friend of twenty years because she kept asking me to go to the pub and I couldn't do it, apparently I was putting it on,when people are like that screw them! im glad you got shut of your partner if they were too demanding, its hard enough for you, after all I bet you wouldn't have done that to them if the shoe was on the other foot, good for you. You can do without being made to feel guilty on top of your illness! nice to meet you , hope to talk again, enjoy the rest of your day as best you can, and rest your batteries! take care x
 

emma

Active member
Joined
Feb 5, 2020
Messages
38
Reason
DX FIBRO
Diagnosis
01/2013
Country
UK
sorry to anyone if you are American and don't understand some of my sayings x
 

Joal

New member
Joined
Feb 7, 2020
Messages
6
Reason
DX CP
Diagnosis
00/0000
Country
CA
hi joal, thank you for your nice reply, im glad youre husband is helpful , mine cooks the evening meal every night after work, sorry I couldn't have been more help, but there is lots of people on here who are more knowledgeable about medications and things, as I say I just use paracetamol , I think you call it tynelol? if I am correct about you being American. Anyway take care joal and hope to talk again, have a nice as day as you can x
hi sunkacola, I say that about my batteries to my husband and father as they think its normal tiredness, we know different don't we? I know what you mean about one time you can do something and then you cant, sometimes I can watch a film with my husband , sometimes I can only watch half a film! and no of course you cant predict it , its not your fault you cant help it, I fell out with a friend of twenty years because she kept asking me to go to the pub and I couldn't do it, apparently I was putting it on,when people are like that screw them! im glad you got shut of your partner if they were too demanding, its hard enough for you, after all I bet you wouldn't have done that to them if the shoe was on the other foot, good for you. You can do without being made to feel guilty on top of your illness! nice to meet you , hope to talk again, enjoy the rest of your day as best you can, and rest your batteries! take care x
I am actually Canadian and it is tylenol that i use for pain.I understood your reference to low battery power perfectly and i like the way you said it,it’s the way i feel.
 
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sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
515
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Emma, Good to meet you as well, and I am looking forward to conversing with you. :)
 
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