Any In-Person Support Groups out there?

[MaryU]

Hi everyone,

I am wondering if any one is part of, or knows if, in-person support groups for AF are out there.
I have googled – hence how I found this forum – with no luck.

I noticed there are Canadian websites that link you to support groups for illness that were once considered “in your head” illnesses, such as Fibromyalgia, Chronic Fatigue, etc.. but nothing for AF.

By the way, I was initially told many times that my symptoms, etc was “in my head”. Anyone else experience that?

And is there anyone here from Ontario? I have only seen two Canadian Online Forums for AF and both are BC originated. It seems like there isn’t much other there per se, unless I am missing something… would love it if someone out there could pass on anything they know regarding support systems. We shouldn’t have to feel alone.
MaryU

[Annabel]

Hi Mary, good question! I don’t know of any in-person support groups unfortunately. However, you could always start one yourself! It’s easier than it ever has been to create groups on websites like meetup.com. Perhaps you could start a group in your area, just for people to regularly meet up, relax, and talk about how they are doing.

[quote quote=9507]By the way, I was initially told many times that my symptoms, etc was “in my head”. Anyone else experience that?[/quote]

This is a very common experience, unfortunately. But there is lots and lots of evidence to show that stress, burnout, adrenal fatigue, HPA dysfunction (whatever you want to call it!) has real, physical effects. Try to educate people wherever you can, and if they don’t want to learn then move on 🙂

[MaryU]

HI Annabel,

I have tried to find AF people in my area – even happened to stumble upon email addresses (through other forums) – however, no one responds. I don’t know why exactly, except I was dialoguing with this inspirational woman who has other conditions (unrecognized in the past like AF is now) who shed some insight.

After she was no longer bed-ridden, and by the way no longer able to work, she began a support group. BUT it took lots of time and effort to find people, and then more to get things going. This was basically like her job, and fortunate for her she didn’t need an income. It is still going 24 years later, only because she has had some help. Sadly though, she is getting older and looking for someone to take over but no one is stepping up. One day she will have to stop because of age, on top of her health. Though her story is inspirational, I do not have the time and energy to do that extra mile on top of what is already on my plate.

I was part of an chronic illness support group once (I also have endometriosis) but it was a one time six week group, that was supposed to meet once in awhile; but after the first reunion, stopped. There was no explanation. It was a government funded and run program.

I am educated myself, but doesn’t mean others will or want to understand. If they can’t “see” it then it is hard for them to believe. People with AF or like conditions don’t “look sick”. I have lost friends etc because of this condition because some people want a solid explanation, doctor’s back up (a “real” doctor – not a ND, etc etc), and so on. Its a tough road.

MaryU
PS I am having great difficulty with this site – not being able to sign on, having to rechange my password – which doesn’t always work, and not getting notification that there has been a reply. Thought you might want to know. Best

[Annabel]

Hi Mary, I’m sorry you’re having issues with the site. If you write down your password, that might help. And when you make a post or reply, just be sure to click on “Notify me of follow-up replies via email,” and you will get an email every time someone replies!

[JennAp]

Hi Mary, I’m in Ontario too. I also searched for any kind of group to find support. It doesn’t help that my GP says I’m fine as my blood work is fine. I told him how terribly I felt and how the symptoms were getting worse and worse, and still he whisked me out of his office. So, now I’m self-diagnosed and going on 8 months of pure misery. (I realize in hindsight I’ve had mild AF for years. If only AF was more well-known, it could save people from going all the way) Anyways, I could only afford a naturopath for one session – so it didn’t help much either because their treatment requires many check ups. I’m trying to help myself as much as possible – even moved in with family now, but will lose my job and home as I only have a month off. So humiliating and frustrating. Since you’re in Ontario, if you find out of any OHIP-covered practitioner who is sympathetic to treating AF, please, please let me know! Considering I have a pre-existing chronic illness and I never let that get me down but AF is now doing this to me, speaks volumes to this horrible thing.

I’m also being prompted to change my password every time I log in.

[MaryU]

Hi JennAp,

Thanks for your response and am responding back with some info that may help you.

1) AF is not diagnosed by standard conventional testing. There are different methods, but the most common is a Saliva kit which is more sensitive in measuring cortisol levels (blood work only detects severe ranges of cortisol – extremely low/high – which then leads to medical diagnosis and treatment of illnesses like Cushings disease and Adrenal Insufficiency. The results from the Saliva kit shows your levels on a graph. I cried when I saw mine as the am level was so bad it wasn’t even on the chart! After some time, I got another test done – it revealed marked improvement, thanks to my naturapath.

2) OHIP – lots to say here. You have to be really sick in most cases to get tests other than standard ones (taken seriously enough, I am presuming based on my experience), as well as to be recommended to a specialist; further, you have to be proven sick in some cases for paid tests (one of my conditions I had to pay for the initial blood test and when proven I indeed had a recognized health concern, my tests became free courtesy of OHIP). OHIP is not like it used to be.

3) Practicing medical supports – I too looked at Naturapathic doctors, but too expensive… I was at my wits end watching my health deteriorate. Then I found out the Canadian College of Naturapathic Medicine (CCNM). I don’t know where you live but there is one in Toronto, ON. The prices are really great and affordable; students and low income receive additional discounts. Further, appts are one hour in length dedicated to your treatment pathway. It has been a godsend for me.
Prior to, I looked at the two-tiered medical centers (where you pay a fee to part of it) but it was super expensive. Recently, I learned of Integrative Practitioners and/or Functional Medicine Practitioners, but they’re expensive too! There is a OHIP rebate of $80 as a patient of some of these services, but not all. The rebate appears to be a one time thing from what I have discerned and been told regarding package pricing.
I so hear you about financial difficulties/loss and other losses, etc. It is not easy!
I am glad that you have somewhere to go during this time.

Hope this information helps
MaryU

ps I also have a chronic illness that took four years to diagnosis (Endometriosis) as after failing different tests, I was told it was in my head. It wasn’t until the point of almost daily excruciating pain and finding a competent doctor that I was offered help (treatment and surgery) within one appointment. Invisible illness are the worst! I hope you can find some help in your area!

[JennAp]

Thanks for your reply MaryU. I’m glad you’ve seen improvements and wish you ongoing recovery.I would have loved to have had a Saliva kit a few months ago when I thought I was dying in the mornings because the hypoglycemic shakes and adrenaline output were so bad. Terrible muscle cramping too. No wonder your initial kit results were off the charts. Our chronic illnesses have definitely contributed to inflammation in our bodies. In my case several long-term social/work stressors are equally contributory, as it is for so many of us. It is definitely the worst to be told “it’s all in your head” – like that helps the overall stress on our nerves – and doctors sending people to therapy and counseling when it’s actually the adrenals. I imagine some decades from now doctors’ offices will eventually have posters warning patients of AF like they currently do for Heart Attacks and other illnesses; but the research hasn’t gotten that far yet and our generation still has to suffer without much med help. I will definitely look into the CCNM in Toronto…but it’s difficult to get out especially without the support of family members who don’t understand the need for naturopathic help. So I too feel at my whits end.

Were you able to take care of yourself at all during the worst of it? One of my biggest challenges besides adrenaline rushes, panic and irritability were not being able to eat. It’s like my digestive system just shut down last August and by December I was only drinking shakes, but barley. It’s gotten better since the holidays and while I can eat a bit of “normal” stuff with the family at dinner time, I’m basically stuck on broth with eggs and vegetables several times a day. I hear many people sticking to broth as their only option. I did read somewhere that eating lots of beta carotene is great for AF. When I starting eating carrots (as many as I could summon myself to eat) I actually saw a tiny bit of improvement in my digestive ability. I’m finding that I can’t eat anything dry (bread, white meat, boiled potatoes, etc. even though these comfort foods were always my favorites in the past). I’m waiting for the day that I will be able to eat without feeling held back by my body. I always loved eating. Now…oh no. I have to force myself every step of the way. But I’ve heard that AF does cause the stomach to shut down because the body sends the energy to more important functions as an effort to keep the body alive.

Take care of yourself and keep in touch MaryU!

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