Hi everyone! This week in the People of HealthUnlocked series, Heather shares her journey with a variety of conditions - some starting as early as her 20s. Are you also living with more than one long-term condition? Tell us in the comments below. Have a lovely weekend.
"I am a 64-year-old woman of deep faith with a variety of diagnoses including: Chronic Fatigue Syndrome (1994), Fibro (2002), PTSD(2017 - following two suicidal losses) and most recently Pseudo-dementia(2019) related to a lifelong low-grade depression. I have experienced a lifetime of traumas including childhood neglect, the sexual abuse of both of my young sons, two divorces, two suicidal losses and more. It is important that I share those traumas with you as I have learned that the things I suppressed without a supportive community manifested themselves in my physiology and brain health subsequently affecting my overall wellbeing. The thing is I didn't understand the connection until decades later.
There was a period of time in my early 20's when I was bedridden with exhaustion and that was scary. I didn't have the energy to do anything. My whole body felt as though it was on searing fire on the inside just under my skin. My muscles ached, I was experiencing severe migraines that caused me to scream out in pain and whimper in tears. It was scary because I never understood what was happening within my own body. During this time I was having marital difficulties as my marriage to my children's father had ended and I was unemployed. I was having memory problems and my activities were reduced by almost half.
At the age of 29, life became even scarier as I was experiencing episodes of losing consciousness/blacking out, muscle pains and severe fatigue. Awaking from sleep unrefreshed followed by periods of disorientation, horrendous chest pain.
At the age of 38 in addition to all my other problems, I began having difficulty remembering words when I needed them, memory, concentration. In 1994 at the age of 39, I heard about a doctor who might be able to help me explore what was happening within my body, so I asked my own doctor for a referral. He was reluctant at first but finally sent the referral. The specialist I met with immediately sent me for a Spect scan at Mt. Sinai in Toronto Ontario which came back abnormal I was told but that the abnormality was common to people with Chronic Fatigue Syndrome. I was told little else and ran home to look up what this thing was that I had.
Sixteen years following that diagnosis and having become quite a Resource Detective (a concept I discovered within a course originating out of Stanford University in the States called Take Charge: Living a Healthy Life with a Chronic Illness) by that time I exercised my right under the Freedom of Information Act to get a portion of my medical record from the Ontario Disability Support Program in an effort to understand why they had denied me a disability income after being diagnosed with a brain disorder. I read these words written in a letter between the specialist and my primary care physician that had never been discussed with me. I was seeing it for the first time as I read it 16 years after being diagnosed. He wrote: "Her Spect scan showed findings that are consistent with Chronic Fatigue Syndrome that is mild, global cerebral profusion deficits. She has also minor abnormalities of her immunoglobulins and she also has a positive antinuclear antibody in a titre of 1:160 in a speckled pattern. I don't think this woman has Lupus as sometimes we do see this in patients with CFS. I am not quite sure of its significance. I cannot give you any idea of what is going to happen to this woman in the future. Looking at her life, I find it interesting to note the truism that the same degree of psychological stress will have different effects on different people. She certainly seems to be a person who can take the slings and arrows of fate and work with them. She has a committed spiritual life which appears to be of great value to her in sustaining her through these difficult times. I guess what I am saying is that I do not feel that the diagnosis is simple. It is a complex matter."
Fast forward to 2017 when I am doing an online course through the University of Toronto in Ontario, Canada on Your Brain and The Science of Memory, I asked my Professor about Chronic Fatigue and was given a new piece of the puzzle of my life.
My Professor said: "Chronic Fatigue Syndrome (CFS) is a dysfunction of the mitochondria in each of a person's cells, including their brain cells and neurons. Mitochondria are the cells' powerhouse, the source of cellular ATP energy. In CFS the mitochondria are simply not producing enough ATP to meet all the energy demands of the body. The question isn't what happened to the energy of ATP? The issue is: where is the needed ATP in the first place?" He went on to clarify, "It would therefore come as no surprise that active memory/suppression are compromised and memory and learning disorders may be the result." He encouraged me to exercise to build up the efficiency of the mitochondria to supply a boost of energy when needed including when I am thinking and making memories. I wept as I often do when I stumble across a puzzle piece that helps me understand my experience of life.
At 42 years of age, I was given a Neuropsychological Assessment and more puzzle pieces were discovered. I learned that my difficulty in understanding and processing information was because I had a reduced speed of mental processing one that would reduce cognitive efficiency making employment difficult and it has. It was also noted that I had mild distractability and deficits related to CFS. Memory tests at this time suggested low-average to average delayed recall of verbal and visual information. And this last line still reverberates in the chambers of my heart, "These scores were also felt to be within expected levels given her measured intellectual abilities." I had it explained to me this year by a former researcher from Duke University that I am intelligent, but that it appears the different lobes of my brain are all working at different speeds. It puzzles me that supports have not given to me with something so serious - I suppose that is why I have become heavily dependant on my faith believing that I am never alone, that God is always there for me guiding me and directing me.
From 42- 64 I continue to struggle with deep memory deficits, concentration and episodes of disorientation/ blackouts/searing pain in my muscles, the occasional severe migraine and unrelenting fatigue. Now leaving all that I have written behind, let me share what has made the difference in my life besides my steadfast faith in God and given me the strength to get up every morning and put one foot in front of the other.
I believe God led me to HealthUnlocked.com communities where I have found a sanctuary of people that I have come to cherish like myself with various struggles who have and share the deepest compassion, hope and strength that I have ever known in my life. The support of these people that I have never met except online has given me the support to take steps in my own journey that I never imagined taking previously because I never had a community of support before. It has made a profound difference in my life despite the ongoing painful struggle that I am in. Within these communities, we hold each other up.
Within the communities of HealthUnlocked.com I have met the most resilient men and women and these communities foster and educate each of us in recognizing our own resilience through the sharing of our stories with one another where we learn that we are not the only one feeling a certain way in a certain circumstance and most importantly there are people in these communities who care about us and what we are going through every day. They are willing to listen to the heartache and to comfort us as best as they can under the circumstances.
If only the world could replicate what HealthUnlocked.com is doing for its many members the quality of life as we know it would be vastly different in our world and many less would be lost in drugs and despair and dying by suicide or drug overdoses.
Thank you for the opportunity of sharing my life with you."
----
Heather has given us consent to share her story.
----
Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at communications@healthunlocked.com
xo, Leilah
Written by
MarketingHU
To view profiles and participate in discussions please or .
Thanks to Heather for sharing a lifetime of relentless health challenges in a medical world still struggling to find the answers. I admire her tenacity and determination to win through and find the answers herself. CFS can still be so misunderstood and dismissed even in the face of emerging research data.
I like the expression Heather used for her experience on HU, ‘I have found a sanctuary of people that I have come to cherish....’
Thank you, LeilahHU, for sharing inspirational stories here.
I admire Heather so much for being a survivor and for her willingness to explore things and research on her own, while struggling with energy. That's huge determination as Newdawn said.
It is tough to go through all those life changing events and health challenges on your own. That's why having support can make such a huge difference, in many ways.
Thank you, Heather, for sharing your story and encouraging us to do our research about out health conditions and keep looking for solutions.
I heard a phrase that says "We don't heal in isolation, we heal in a community" and that's so powerful.
Wow Heather's story shows how we can come together as a community no matter where we are in the world and help each other.
When I read things like this I feel guilty that I had what appears to be a great life until I had my breakdown at the age of 44.
I was blessed to find HealthUnlocked as I struggled to get help. Even although I was fighting to get healthy.
I was lost from HealthUnlocked for a while when I could have used the support because it seems that in the Western World if you struggle to leave home, or pay for food that not having an internet connection or device to access the internet is really really bad and makes you look really stupid when you aren't.
I am so grateful that I have worked out how to get internet again to help me connect with HealrhUnlocked, so that I can gain support from others as well as passing on support to others who need it to.
One thing HealthUnlocked communities has taught me is that we are all unique and as such we are all blessed and it is okay for us all to be unique.
I don't think having no Internet makes anyone look bad but it does make it harder to connect to people and reach out for support, particularly if you are unable to leave home for periods of time.
There are places with internet connection like a library which usually is free of charge but not everywhere.
I agree, HealthUnlocked is great to facilitate people from all over the world to come together.
We heal in a community, not in isolation. Nobody should be alone in their struggling...
I have had a few bad experiences with people not getting the not being able to leave the house and having no internet connection or even telephone to be able to complete their forms or get support.
I have missed the support of HealthUnlocked while I have been away.
I am a true believer in that we can help each other, even although I was told by someone in the medical profession that meant I was gullible and would be seen as a soft touch and used. Even after they eventually did use my good nature I still stick to my core beliefs in that helping each other is what we are meant to do.
Helping each other, leads to us improving and helping ourselves and hopefully to a better world.
In India, there is an expression 'Can all this happen to one person?' when someone shares the various trials and tribulations they are going through. Like the story of Job. But it does happen in life! And I feel sad when I read Heather's story which includes being at the mercy of the medical system which decides which problem is severe and which is not.
Do tell Heather that we are all there for her in mind and spirit. I hope she gets better and can look forward to better health and peace in the coming years. Do refer her to the book "How to be Sick" by Dr. Toni Bernhard that I spoke of here some weeks ago. There are exercises mentioned in it that suggest how to deal with pain, fatigue and emotions that accompany being chronically ill. And do tell her to keep posting here. I like her presence.
So sorry to hear what you have been through must have been terrible doing it and sill.carring on with life and finding healthunlocked knowing that were all in this together brings a sense of relief im not religious but god was looking over you
I don't believe in God although I do believe in certain forces out there, and I also think our bodies are very poorly designed. I am sorry for the fact that your life has not been good. I've not been dealt a very good hand, either. And I do believe that traumas in life or persistent sadness, ongoing abuse, bad fortune or isolation etc perhaps cause or trigger heart issues, particularly if you have a predisposition to heart issues (eg runs in family).
I mean, you can die of a broken heart. Sometimes I think that is my issue, why my palpitations have gotten so much worse since last year. I've had a lot of s**t happen over the past 12 years or so, far more than my fair share, some of the cruelty hurled at me has been beyond belief, and it has impacted me both physically and mentally. And my friend died suddenly in April 2018 and that really messed me up. It wasn't suicide, either nor was she terminally ill. Then my dad died a few months later. Possible triggers for my palps getting so much worse.
I'm glad you find this forum really supportive. Most people on here seem to be kind and supportive. What I think is a shame is when you are already very down, scared, alone, and not feeling well, and you post on here hoping for a bit of support and kindness, and you get knocked down further by someone who isn't one of those kind and supportive types. But with any online forum, there is always at least one who helps to wreck the supportive mood and nature of a forum. Hopefully you won't come across this yourself.
And if believing in God helps you, then that's great for you. I am not someone to knock someone else's beliefs. My grandmother believed in God, always, and I adored her and I miss her. Sometimes I wish I did believe in things more but I just don't believe in much anymore x
I've been through trauma related to my daughter's sexual abuse at the hands of her stepfather and I'm surprised there is no mention of PTSD or C- PTSD as I'm sure Leilah will have it due to the various trauma and that would effect memory in a myriad of ways. I thought I had some kind of dementia until I realised what was going on and my daughter has to make out she is stupid at work because she forgets on a daily basis and feels unable to talk about the trauma that causes it.
Your determination to get answers , not to let go , get various opinions which sometimes challenged , questioned then went out to clarify shows your strength. I was however perplexed to read that you attribute some of this to god . Stand tall. This is all your doing. You don't need to hide behind a crutch or dilute your ability and confidence. Why especially women do we need to try and find somebody else to
honour. You have survived though so much - the majority on your own via adversity and pain . No mythological character can get you through that . Please be proud of you . You did this . Nobody else .
This has been a great post and ur the one that has brought it home. I have seen religious beliefs keep people fighting and for some it's everything. I agree that the force that drives us will manifest itself in different ways but keeping us alive is our ability to find a coping mechanism of hope. I commend you for celebrating "HER" accomplishments as a strong woman and grappling the best and worst of what life has to offer. People are the incredible forces of nature and if we are to keep going after tragedy then we are the ones who shine the brightest. We are the creatures of majesty and these triumphs are given away but we need to be the first one's we should pat on ourselveson the back.
Thank you LeilahHU for sharing Heather’s story. I am sorry she has been through so much in this life. I applaud her continued work to get better! God is indeed good, Heather, and it is such a comfort to put our trust in him!
Bless you Leila, what a long, terrible journey you have had but our good God has sustained you. Praise God ! ( He sustains me too but I have nowhere near as many problems as you} Every good wish to you,
i have so much empathy for you and the many health problems you have been dealing for decades. im wondering if you are currently suffering from ckd ? i would be interested to know if you are now fighting ckd and some of the details surrounding that ? please let us know. members may be able to help you to a greater extent with that issue. knowing you present status around that issue may help members to help you with whatever specific problems you may be having around ckd. i give you all my support for sharing you story. my very best for your recovery.
The NewsFeed shows all the posts from all the communities you follow. This is the HealthUnlocked Latest community where HU share different inspiring stories of members from all the communities/all health conditions.
When you look at other posts you will probably see other posts with the name of the Kidney community next to the username underneath the title. That is how you can see which community the post comes from.
Members can have many different health interests and belong to many different communities with different health conditions or interests like running, fitness, eating healthy etc.
When you look underneath the Post title, next to the username there is the name of the community. That is how you can see to which community you are replying.
It can be helpful when you follow multiple communities on HealthUnlocked and using the NewsFeed.
Thank you and blessings to Heather for sharing the pain of her experiences. You have been and still are very brave, Heather. I'm so very glad that you have found us. This is an exceptionally caring and compassionate community.
I know that, Mitzi, it is the compassionate care that I found within this sanctuary online that gave me the courage and the support to be transparent. My life has been forever changed by the communities within HealthUnlocked.com which is why I wanted to share my story.
Thank you Heather for sharing your story. You are an inspiration. I also find my strength in God and He is the one who helps me keep going on those really tough days. Hugs to you.
Please tell Heather that I am very sad she has suffered so much; she is a very brave lady, who I shall remember in my prayers. She certainly puts my own life experiences into perspective. Please may she let us know how her life is now, general as well as medical. I send her a hug & a kiss. OX
This is an important message for Heather. My husband suffered for 12 years with what was diagnosed as CFS. It came after having undiagnosed lyme disease which was finally cured with a long series of IV antibiotics. Shortly after he was hit with an even worse fatigue and various symptoms.
After seeing many doctors with guesses from Lupus to malaria, he was referred by a physical therapist to a neurologist from Johns Hopkins who had his own practice. He did not seriously accept diagnoses of CFS and said that most people with these symptoms have severe nonheadache migraine that can manifest itself in various parts of the body (headaches may or may not be present). His solution is a tyramine free diet that left out foods like beans,nuts,tropical fruits,caffeine,alcohol. In a month or more my husband began to have a life again. He had been mostly bedridden and used a scooter when going out to appointments. Now in his 70s he can walk 10,000 steps most days. Under stress he will occasionally have a relapse of fatigue for awhile but nothing like the old days.
Please give this diet a try. The book by Dr. David Buchholz can be found on Amazon and is entitled "Curing your headaches 1,2,3." It gives the diet to follow and experiment with.
I am on here because of my own periodic depression/anxiety from past traumas in a sensitive person like myself. Like you I have found my greatest help in God and a spiritual life. This along with daily exercise, a diet of fruits and vegetables (occasional fish or egg are the only animal products). My protein comes from beans and nuts. 15 mins a day of deep breathing is also healthy as is a support group or active social interactions.
I hope and pray this helps as it did for my husband.
Thank you so much, Junella, for sharing your husband's experience and referencing the book. I will get a copy and try the diet.
I have had a history of severe migraines for decades. I will let you know if my situation improves because of this information but nonetheless, I will be forever grateful that God moved you to share this information with me. I am confident that His plan is in operation for my healing - I have lived with that hope now for decades.
Hi Heather. It sounds like you've experienced severe mitochondrial dysfunctions all your adult life. It's possible that you're lacking in thiamine transporters to cross the BBB, so if you haven't tried already, try supplementing with Allithiamine (TTFD) along with a well balanced active methyl B complex, a good multivitamin, and Magnesium (glycinate, taurate, or L-Threonate ) - all are needed cofactors for the krebs cycle to generate ATP, especially the thiamine. The muscle pain could be due to lactic acidosis, also a sign of thiamine deficiency which unfortunately won't be diagnosed unless you test for transketolase enzyme activity (labs rarely test this).
Start slowly with Allithiamine 50mg for a week, and then titrate up to 100 mg slowly.
It's possible you'll experiences worsening of symptoms before getting better - which is called paradoxical reaction.
crickey, that's the 3 supplements I woorked out I need more than others about a decade ago..and they helped a LOAD I took Thiamine hydrochoride njections though whih I importd from Canada. I thinkafter abouy 2010 0r 2012 I no longer could, and my PMR came on from there and my memory isue I think...interesting someone else founf he same stuff. I used to puch it bit on a blog on a uk site.. as it heplpe me so much. so where do you get allithiamine from and what brand. I import from ihern usually..grestat delivery service to Oz.
I have drawn the same conclusion that I have suffered severe mitochondria dysfunction most of my life. I was bedridden in my late 20'a and that was a scary time.
Without a physician, I don't begin to know how to follow through with your suggestions so will reach out to MitoCanada,
Thank you for your knowledgeable recommendation, I do appreciate your insightful suggestions. May I inquire as to what the BBB stands for?
BBB = The blood-brain barrier. The reason I recommend Allithiamine or Lipothaimine is because it crosses the lipid BBB. The bio activity is the same as thiamine (vitamin B1) but the disulfide form reaches the brain effectively for those lacking in transporters. Google Dr. Derrick Lonsdale and you'll see a lot of helpful articles written by him. There's also an in-depth book on the subject that may be of help.
The Allithiamine comes in 50mg pills. Start with one a day, combined with the needed co-factor magnesium. Be sure to take a good b-complex and multivitamins since all Bs work in concert along with needed trace minerals. Remove all forms of sugar and refined starch from your diet. Try to eat organic as much as possible to avoid pesticides and toxins such as glyphosate.
Monitor your symptoms for a week - you may feel great right away but notice various paradox symptoms as your body tries to heal such as fever, heart palpitations, aches, etc. As long as you're feeling ill, do not increase the dosage and keep taking 1 pill a day right before a meal even if it takes weeks. You simply can't avoid the paradox reactions and the worse you feel, the chance of healing and better outcome increases - this nutrient/vitamin re-feeding reaction should not be confused with pharmaceutical drug side effects.
Once the paradox symptoms wane off, add another pill with another meal =100mg, repeat above.
The ultimate dosage depends on people, and some require a much higher dosage up to several hundred or even grams. For a DIY, I'd limit to 200mg per day, or keep it at 100mg long term.
The remarkable thing is, Happyme123, He is - He has been my guiding counsel while researching these issues. I am starting to think about seeking legal counsel in these matters, though I can in no way afford them but if it is part of His plan, He will make a way, He always does much to my amazement.
Thank you for your love and support. It is profoundly medicinal at this time as are all the responses here.
It is so amazing, your resilience and drive for something greater than yourself seems as though I needed to hear this and pause for a moment. I thought I had read post already but I am glad I did. We all have our specters that keep us awake at night. Your words are felt in a way that the inspiration and mental fortitude is admirable to say the least. A lot of these things you've been through have struck a cord to say the least! I can relate but as with anything else in life, a mind is a fragile place. Every now and then u see or hear things that test ur own mental fortitude. That's why I come to this forum, I will be a fly on the wall but as I've been changing more and more the words escape me as well. It has always been a challenge letting people in but for the first time in my life I have opened up. We all should have the ability to distinguish good from evil and know when we are beneath ourselves. The Pain I seen and felt in ur words should be a guide to a better existance. I am hauntingly humbled to have read this post and I may not be the most chipper fella on the block but I am reminded of the days when things were insurmountable and then I went to sleep and woke yet again. You are an inspirational, incredible human being. I have grown to appreciate the fact that I can be this fly and the times I do buzz around, I seem to stir the pot. This is the struggle that the mind puts us through but as a super woman, I see that an impass is but an obstacle and not impenetrable wall. I hope the days of old are just that and u have let so many in and in return u ask for not. I've know very few beacons of hope in my life, you are a reminder that we all have a duty to be the best we can be. All things considering. I wish u the best and hope others read this and reach a similar place. We struggle with the realization that we are just human but on occasion some are much MORE ! I am happy to have met your acquaintance!
Fattius, thank you for your deeply profound response. I am awed that my struggle has impacted you in this way and I can only praise God, the author and finisher of my faith.
You are correct, the mind is a fragile place and can be very dark and foreboding at times. I lived in that head space for decades and its impact is still manifesting in my physiology.
I celebrate and rejoice that for the first time in your life you have opened up here. In my journey, I have learned that silence leads to the death of a soul. Feeling listened to and understood changes our physiology and being able to articulate a complex feeling lights up our limbic (emotions and memory) brain and creates an "aha moment."
Your words remind me of something Albert Schweitzer is to have said, "At times, our own light goes out and is rekindled by the spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us."
I do not see myself as you describe "super woman" but perhaps a tenacious ant determined to get to where I am going wherever the good Lord determines that is.
Let us be grateful for one another and fanning the flame within each other, here and now.
Please thank Heather for sharing her story. What awful health experiences she has gone and still going through but I'm so pleased she's been strong enough to share these with HU, I too find HU really supportive and helpful. I'm so pleased Heather has faith which helps her get through her daily struggles with pain.
Well done Heather for sharing your story and showing us courage.
Please tell heather to get an MRI/MRA if at all possible with arterial spin labelling (I couldn't get that) and perhaps TOF (time of flight)_ I got that but nooone looked at it.. these are additional software iused in knowledgeable hospitals in the US. I'm in Australia. I had a lot of that stuff too. I finally got a good r=adiologist who diagnosed my MRI as moyamoya. Its rare so the previoys two MRIs (in 2003 and 2008 , the radiologist missed it). It would cause what Heather had ben thru and more. Best to rule it out. In the UK its treated mostly conservative in Great ormond st in LOndon I think. at least rule it out. Things that helped me ..a daily 100mg or 80mg aspirin, drinking loads of water (at least 8 -10 glasses aday but usually a lot more, trying not to get overstressed.. (I know difficult bu it means opting out of life asically!, sigh...and caffeine.. constant tea most of the day with an occasional coffee. the aspirin and caffeine work for the headaches. >.and get tested, w=even if just to rule it ut. ts rare..like one in a million but pople still get it. usually you have a few mini strokes TIA's a s well like dropping things and stumblind and triping and feet not picking up, as well as that blanking out.. maybe some tingling..and the headaches and fatigue. It can be treated at her age..and can become normal again ..for some
My life was very similar but only the illness, it was getting that way that every time I went to the hospital I came out with a new set of letters and a thick leaflet , or another illness
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
