Morbid Greetings from GTA Ontario, Canada

AhZo

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Nov 23, 2022
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31
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DX FIBRO
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Hello. I would rather not be 'here'. Not that the community do not seem like wonderful people, but I would rather not have to deal with this.
Recently diagnosed with fibromyalgia after years of complaining to my doctor about pain, documenting so many seemingly unconnected pains leading to extreme depression - or rather: which came first, depression or pain?
I am in my later 50's. The last 4 years or so have been a desperate drain circling: First diagnosed IBS, then Autism Spectrum Disorder/ADD (actually, that diagnosis was a briliant eye-opening, but the reality is it really sucks to be an adult diagnosed with Autism because there is literally zero support or understanding), neuropathy, and now Fibromyalgia.
I typed a bunch of stuff about what I am going through, but it is quite depressing to read. Just want to say hello and go back to lurking a bit.

Currently attemping duloxetine to treat this and I hatehatehatehatehate it.
The ideation is through the roof.

But on paper, is it ideation or just common sense/logical?
 

sunkacola

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Greetings AhZo, and welcome to the forum that none of us want to be on! You are not alone, even though it no doubt feels that way.

A quick look shows that there are several forums for people with Autism spectrum. I cannot link to them because outside links are not permitted on this forum. And... how good they are I don't know. But you could go check them out to see if any of them will be supportive in the way you need for that part. It's not the same as in person, but maybe it can help. I just typed in "forum for people with autism"

And....keep coming here!
This is a place where it's safe to say how you feel about what is going on with you. Rude or uncaring/unhlepful people get booted off. (Usually by me, I am a moderator). You can ask questions, get other's experience, and suggestions, and you can just vent if you want to....we have a special section just for that.

One thing - if you hate duloxetine, stop taking it! Get your doctor's advice on tapering off it, of course, and be careful with that. But it is a drug that is known to cause ideation in some people who take it. It sounds as if it is not the right thing for you.

You sound like someone who thinks things through and analyzes what is going on rather than assuming one or the other. This is a great quality to have because the process of dealing effectively with fibro and learning to manage it involves a lot of experimentation. I have written a whole post on this, and I wrote it because when I changed my approach and how I dealt with my fibromyalgia, my life improved. You can deal with it with little or no drug use at all if you want to. There's no known cure, but these things I talk about in the post can really help. You have to put in the effort and time, but for most people who do it is well worth it. My own experience and the great improvement in my life led me to write it.
Here is that post:

I get the ideation. Been there. In spades. but I have found that it is possible to have a good life within fibromyalgia. And I know that it is also possible with autism. Many, many people who are very accomplished, intelligent, and have good lives are on that spectrum. some say they wouldn't want to be any other way. I think if you can find others in one of those forums, you will get a lot of support.

Life is worth living. sometimes we need some help, and I have been there. If you can get support (and you will here, for sure) it is possible to change your mind about things. Hang in there.

And one thing - The one thing you can count on in life is that things always change. How much, in what direction we cannot predict. But everything always changes. It can be change for the better for anyone.... for you. I believe this completely, and will help if I can. so will others here.

Sending you good energy.
 

Cutiegirl

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Joined
Sep 18, 2022
Messages
73
Welcome, AhZo. Glad you are here! I was able to look up duloxetene as I hadn't heard of it before. I tried looking up ideation but there were many definitions. What does ideation mean? Just curious. At this point, I am only taking 30 mg of amitryptaline at night to help me sleep. If I stick to am AIP diet (which helps eliminate my pain), exercise, massage, acupressure, etc. I can manage my fibro. Very glad you are here. I have learned so much these last few months.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Hello AhZo, and welcome.

As has been said, none of us truly want to be here because of the reason for being here. But, it is nice to have a place to be with others that "get it" and can understand what you are going through when so many in our world do not.

If the duloxetine is not working for you, I also encourage you to speak with your doctor about discontinuing it. There are other options, including non-medication options, to manage this thing called fibromyalgia.

I also strongly encourage you to read through Sunkacola's post - it is a long read, but WELL worth it. I know it has helped me already simply by making a couple of dietary changes that I would never have thought of without reading through it.
I had considered gluten intolerance before, but did not test that theory out as thoroughly as I should have until reading that post.. also the nightshade family of veggies..
I had long ago cut out peppers of any kind, including the mild green peppers, due to other reasons, and have more recently (if you can call 10 yrs or so, recent, lol) cut out uncooked tomatoes as well.
But potatoes?? never for a minute did I consider those as a problem - until reading that post and reading up on the nightshade family of veggies. It is a good thing that I like sweet potatoes because they can be substituted for reg potatoes in so many ways and are a much healthier option as well (as long as one doesn't add all the sugary stuff to them)
 

AhZo

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Messages
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DX FIBRO
Country
CA
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Thank you, @sunkacola
I typed a response, but then deleted. I am a two time survivor and I am just tired.
Thank you for the link. I will delve into it further over the next few days.
 

AhZo

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Messages
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DX FIBRO
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Greetings & thank you @Cutiegirl
Ideation: I shortened the term. There is a word that goes in front of it which I find inappropriate to discuss in mixed company. Shortening it I figured would mean only peole who knew what I was talking about would get it. Sorry. It is "dramatic".
 

AhZo

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DX FIBRO
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Thank you @cookiebaker
I think more than anything it would be nice to have a place to vent. The husband does not always understand when I can do nothing but moan in pain, holding my body in a bizarre contortion because that is the only way I can breathe. Or when I fall and can not get up because my arms are too weak. I used to exercise. Now it is a strain to navigate the 3 steps to the back door to let the dogs out.
As for dietary cahnges, I went through the low FODMAPS thing when I was diagnosed with IBS. NONE of the categories were a trigger. I believe it is purely anxiety that triggers my IBS.
However, I generally do not eat processed foods. I am one of those 'make everything from scratch' people, including many condiments. I had to quit making bread by hand because kneading was too painful a few years ago, but we recently purchased a bread maker so I am much better/happier.

Are not sweet potatoes still in the nightshade family? I am not a big potato eater, but my husband is.
Sorry, just looked it up: no, they're not. amazing.
I believe you do not do spicy so I will not share my sweet potato soup recipe because it has chipotle, habanero. ;)
 

longtimer

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Joined
Feb 5, 2020
Messages
76
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DX FIBRO
Diagnosis
02/2020
Country
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AB
Hi There!

I hate duloxetine too - I've been trying to get off it for years, and my doctor keeps insisting i need it, and more of it. I totally get your post - this condition is awful and it seems impossibly hard for others to understand what you are going through. I find I have to keep repeating to my family - I am exhausted, I have constant pain, I have fibro - they seem to think this will just go away and it doesn't, so they seem to wonder why am I constantly acting this way... at least people on this board understand and empathize - so you aren't alone.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
I believe you do not do spicy so I will not share my sweet potato soup recipe because it has chipotle, habaner
you would be correct in that belief, LOL I cut all of that stuff out when I had ulcers - at age 16. :cautious:

however, i do like my garlic, onion, and other seasonings as well. have been using turmeric a lot more lately, too.
 

sunkacola

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Greetings & thank you @Cutiegirl
Ideation: I shortened the term. There is a word that goes in front of it which I find inappropriate to discuss in mixed company. Shortening it I figured would mean only peole who knew what I was talking about would get it. Sorry. It is "dramatic".
Thank you for that, AhZo. It can be a trigger for some people, so I appreciate your sensitivity. It is not improper to talk about it on this forum, and other people have, but it is good of you not to go there. You may talk about how you feel if you want to and if you think it would help, though. I knew immediately what you were saying; others who have been there will also.
 

AhZo

Active member
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Messages
31
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DX FIBRO
Country
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Thank you for that, AhZo. It can be a trigger for some people, so I appreciate your sensitivity. It is not improper to talk about it on this forum, and other people have, but it is good of you not to go there. You may talk about how you feel if you want to and if you think it would help, though. I knew immediately what you were saying; others who have been there will also.

Thanks for the kind words, but I use the negative words in familiar company.
I have been fighting so many things for so long and I am just tired of being in constant pain.
When there is no hope, there is no fight.
 

AhZo

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Messages
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DX FIBRO
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you would be correct in that belief, LOL I cut all of that stuff out when I had ulcers - at age 16. :cautious:

however, i do like my garlic, onion, and other seasonings as well. have been using turmeric a lot more lately, too.

I could not live without garlic and onion!
And side note: When I did the low FODMAPS thing, it was pure hell cutting out garlic, onions, and gluten for months.
I find capsaicin helps my pain, actually.Maybe I have been cooking too much French lately and should go back to Mexican and Middle Eastern!
(about the only thing left that I can do is cook a couple times a week, so that is about as deep as my comments can go: food)
 

AhZo

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Messages
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DX FIBRO
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Hi There!

I hate duloxetine too - I've been trying to get off it for years, and my doctor keeps insisting i need it, and more of it. I totally get your post - this condition is awful and it seems impossibly hard for others to understand what you are going through. I find I have to keep repeating to my family - I am exhausted, I have constant pain, I have fibro - they seem to think this will just go away and it doesn't, so they seem to wonder why am I constantly acting this way... at least people on this board understand and empathize - so you aren't alone.

Had my (GP) doc appointment yesterday and I'm OFF the duloxetine.
I do not know how I would handle a doctor who insisted I take a medication whose side effects are possibly worse than the disease. I tried a month. I wanted to stop at 2 weeks, but doc suggested trying 2 more weeks which ended yesterday.


That must be frustrating to not feel like your doctor is listening to you.
I have communication issues and I am used to that. So sorry you have to deal with that.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
I could not live without garlic and onion!
me either! LOL Garlic and onion are staples in this house..

I find capsaicin helps my pain, actually.
have you tried any creams/ointments with capsaicin in them?
My partner has skin issues - mostly on his forehead, and he has tried all sorts of things for it, including prescriptions.. about the only thing that has really helped him has been a cbd ointment with capsaicin in it.
 

AhZo

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Messages
31
Reason
DX FIBRO
Country
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State
ON
me either! LOL Garlic and onion are staples in this house..


have you tried any creams/ointments with capsaicin in them?
My partner has skin issues - mostly on his forehead, and he has tried all sorts of things for it, including prescriptions.. about the only thing that has really helped him has been a cbd ointment with capsaicin in it.

Now I am craving roasted garlic slathered on freshly baked french bread. mmm
But cooking "Hawaiian" style this weekend.
I believe one of the creams we had included capsaicin. I do not remember if it was more special or not. I find that eating spicy food increases my alertness and blood flow and resolves little aches and pains. But I do CBD daily, in edibles that I make, usually in the evenings.
Reminds me that I am trying to use it during the day too.
 
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