A study comparing over 100,000 people with stress-related disorders - including Post Traumatic Stress Disorder (PTSD) - with their unaffected siblings has found that those with the disorder are much more likely to develop some forms of auto-immune disease.
One finding of preventative value was that people treated for PTSD (including prescribed SSRIs) were less likely than untreated people to develop the AI condition. So - if you can - get treatment for psychological trauma!
The study doesn't provide evidence of the mechanism involved, but one of the authors suggests it may be due to stress causing disruption of the hypothalamus-pituitary-adrenal (HPA) axis that regulates autonomic function. That may be expressed in lowered cortisol levels and increased inflammatory responses.
It makes complete sense to me also. Similarly children and adults exposed to war, starvation and diseases relating to these eg Ebola, are at a hugely increased risk of autoimmunity so I’ve read. Trauma (physical or mental or both) can occur during birth or infancy as it did with me. Then all the other life stuff just piles on top I guess. X
Makes complete sense to me too Whisperit. My AI started after great stress. It's known to be one of the triggers. I've developed all my AI illnesses at stressful times, maybe trying to have another one now!. How are you getting on?. X
I was born with several genetic AI conditions. I experienced all of the stressors mentioned and do have PTSD as a result of the severe abuse/trauma starting in infancy and is still ongoing. My only sibling has as many health problems as I do or more. He suffers serious mental health problems and is heavily medicated.
So I totally agree with what I just read.
Thanks again. I hope you will be as painless as possible dear whisperit.
My Faith in Him has helped me endure it all. The ongoing still stings but only slightly as I’m 6 decades now exposed to it.
Some things never change and it appears I can’t make any headway with my dad despite my very passionate and loving pleas. So I’ve forgiven and I’m letting Him take over the task.
6 decades is a very long time to expect a miracle but I’m living proof they do occur.
In 1998 I was 47 when my mother was dying from non small cell adenocarcinoma/lung cancer.
My mother only wanted sons and I therefore was the thorn buried deep in her flesh...the irritant that was hated and wanted excised and discarded.
Her mental illness and destructive life choices were the catalyst for tearing apart /preventing my brother (7years younger) and my dad and I from being a family. The destructive pathology unfortunately was repeated in my brother’s life.
I learned from this total dysfunction what NOT to do in Life.
Just 5 days before her death and after 18 months of doing cancer care for her to aid my working dad, my fervent prayers were answered as I kissed her on her cheek and told her that I loved her she replied,”I love you too.”
That was the first time she ever said that to me and the last.
Shortly after that miracle she slipped into a coma and died 5 days later.
I guess I’m sort of an enigma in that there are many types of pain and levels of it. What I’ve endured in my nearly 7 decades of Life has made me better able to endure the suffering of my physical conditions much better than most people.
Unless you have battled in my wars you really don’t understand how to push through/carry on in Life despite what is thrown at you.
I am empathetic to everyone’s plight and encourage you all to never give up or in. Keep your faith and wait for your answered prayers. It happened for me and it can happen for you all too.
Shakespeare's dictum, "This above all/To thine own self be true" is, for me, a profound truth. We cannot make others treat us well, or change how they are. Sometimes the only option is to protect ourselves from what is damaging so we can continue to act with integrity and grace. Even though we may still be hurt by them, we can feel good about ourselves x
I know that I feel so much better after months of treatment for my PTSD. Not only have symptoms lessened my positive antibodies all dropped to negligible levels as well. I wish I had treated my life long history of anxiety years ago. Maybe I could have avoided lupus, APS and my subsequent stroke. CBT mindfulness and ACT have changed my life for the better.
I have always had excema [I can never spell that right] and hayfever I didn't get really ill until I had pleurisy. then I got colitis straight after while I was still weak and the rest followed. I suspect I had osteoarthritis from early teens but I don't know if there was a trauma I don't remember. I know I have always felt anxiety and worry a lot but that has always just been something to live with because 50 years ago it wasn't something you saw a doctor for. I've always blamed the pleurisy as being the trigger. May be there was something that I've blocked that causes the anxiety and that is my trigger.
Fascinating post Whisperit - I have always believed that trauma has had something to do with AI diseases. In my journey to help myself feel a bit better and to come to terms with past events (as well as a diagnosis of PTSD in my early 20’s) over a period of months, I undertook some sessions with a somatic experiencing therapist (who also does my accupuncture.) He helped me to release the sensations relating to past trauma that were held/trapped within my body. I realise it might not be everyone’s cup of tea but painful as it was/is, this therapy seems to be working for me. There is a book by Peter Levine called “Waking the Tiger” which explores this kind of healing.
Also, I have had some fantastic support and understanding from friends here - which I believe has made a massive contribution to my sense of well being and helped me to feel less alone. All part of the healing process! Love to all xx
Thanks Hw. Yes, I don't suppose there's a single approach that works for everyone - SSRIS certainly aren't effective for all. Glad to hear you've found some ways of helping yourself x
Yes indeed, thankfully there are a range of therapies for people to try, it’s just a process of finding the right one or mix of therapies! I took amitriptyline for nighttime anxiety and it just made me feel more anxious! So ditched those (after getting very anxious about deciding to ditch them) and tried other well-being stuff which worked for me. X
I agree, whisperit -- fascinating post! And Horsewhisper, I've read that Peter Levine book. I think I might still have it on my shelf. It sounds like you've come to very good terms within in the way both emotional and physical things manifest for you. Helpful comments here.
I will also put a book title out there on PTSD, which had a profound impact on me.
"The Inner World of Trauma" by Donald Kalsched. It still a book of great comfort to me.
What you say about finding the right mix of therapies is so totally true Horsewhisper. Support and understanding, Kay -- totally agree! And can't imagine either that a single approach could ever work for anyone. It seems that it takes many years, just like connective tissue disease diagnosis! : )
Working with children who had been severely abused and neglected was my job until illness decided I'd done enough a few years ago. You've reminded me of Bessel van der Kalk's "The Body Keeps The Score" - a book I used to find full of insights for that work, but which I haven't looked at since then. It's all about the links between trauma and illness so maybe I should read it again. Isn't it funny how we can build these walls between different parts of our lives? Doh! Thanks! x
I have an appointment booked to see my GP regarding SSRI treatment soon for this very reason. I had a breakdown last February after various stressors became too much and my health deteriorated quickly and many inflammatory symptoms appeared quickly. I was diagnosed with generalised anxiety disorder and have found CBT therapy helpful but anxiety is still a problem and I know it manifests into physical symptoms and seems to either bring on or make flares worse. It is also stopping me from wanting to try further treatment for UCTD which I know could end up making things worse. I've decided to tackle the anxiety first in order to move forward with treatment. I hope it works because life is difficult living in fear of what's happening to your body. Thanks for posting this, it's very helpful.
Due to bleeding concerns I could not take Ssri's due to plavix and,at the time, aspirin treatment directly after my stroke. I was drowning in my anxiety so initially before my therapy started to make progress I was advised to take a low dose of Zanax for the very reasons you mention. I took a few doses as needed when I had attacks. Sometimes we need meds too:). Many doctors are now treating vets with ssri's early after trauma in hopes to avoid acquiring autoimmune diseases.
Ssri's are safer and better but not instantaneous. I would have preferred that route but maybe not being able to use them made me work more on meditating, walking and controlling my diet better which has improved my well being after a while. I will not lie I did not like taking the Zanax so saved it for the worst times in the beginning and have just tossed the rest out a few weeks ago.
Yes I've been too scared to take them even at the worst times. They are sat in the cupboard a bit like a last resort. I have managed to reduce my anxiety a lot through diet and CBT, I've been thinking of trying mindfulness, meditation and yoga as another option before SSRI's.
This is so interesting - I wonder if one day, treatment for PTSD and the use of SSRI’s will become standard in the treatment of trauma victims to stave of the potential acquisition of an AI disease? No doubt trauma has been well-defined medically; not just physical, but psychological - it would be a great way to tackle the potential occurrence of these types of diseases before they take hold, here’s hoping for the next generation....
This is so interesting, absolutely. So... not sure if this is helpful... But I did actually embark on years long psychotherapy treatment for PTSD both without medication at the beginning; and then with medication (Citalopram for 1 year. I still take Diazepam from time to time). I got cancer 4 years into my psychotherapy process. Then Connective tissue disease 4 years after cancer...
So due to my experience, this is a bit of a different take. I believe those of us with PTSD are extremely aware and sensitive people. I wonder that my psyche's involuntary hyper-vigilance was alive to what was developing in my body -- before any medic would be able to pick it up -- and creating an anxiety and active dream response to warn me. I know this is sort of the reverse of what we're talking about, but it has made sense to my situation.
Happy43, I found Diazepam very helpful. Like an anti-inflammatory for anxiety/tension. It gives me about 2 hours calming effect. Just don't want you to feel afraid of the medical help that is there and prescribed for you. And when you feel stronger, I could not suggest anything any more than regular exercise and walks in the fresh air. And communicating with people who understand. You have obviously already figured that part out yourself! As we all have... : ) This site is fabulous.
Thanks whisperit for posting this despite you feeling so very unwell you couldn't even respond for a couple days. Really sorry to hear that. Hoping for an upswing..?
Panda you have just written my thoughts exactly! I too think that PTSD-ers have a hypersensitivity. Maybe this hypersensitive reaction to trauma manifests itself into a possible genetic mutation that makes us more likely to have AI diseases? Interesting that friends’ responses on this thread has explored interlinking themes associated with PTSD regarding anxiety, genetics, therapies etc. Thank you @whisperit for such a thought provoking post!
It's often a difficult process to find the approach that works for us, isn't it? I took SSRIs at one point and found it quite unpleasant - but it seemed to give me a kind of 'jolt' that got me to change some other stuff in my life, and that was what helped. Then I had a road accident that put me in hospital that put me in hospital for 3 weeks - back to square one! I was quite lucky with getting rapid diagnosis of UCTD, but like virtually everyone else it seems, have still had the experience of having to persuade multiple clinicians that my symptoms are real. Overcoming anxiety and self-doubt is a critical part of coping with lupus x
Hi yes it's very difficult to find the right approach. My resolve has been tested to the limit over the last 4 years of autoimmune journey and at times when things are bad I do doubt my own ability to bounce back and that's when I consider help with medication and whether it might even things out rather than be up and down so much with anxiety and self doubt as you say. I have changed my diet and had CBT counselling, both have been helpful. The only other things I would like to try are mindfulness, meditation and yoga so maybe I'm not quite ready for SSRI's yet. Sometimes you can dig deep and find the extra fight in yourself and there are good days and bad days but I find this disease has drained me and made me question what symptoms are real and what are caused by anxiety. I hope I can find more coping strategies as anxiety definitely makes symptoms/flares worse or last longer. Thanks for your reply and help.
I also was very reluctant to take Citalopram (SSRI) and found it somewhat unpleasant too, like whisperit (particularly at the beginning and when coming off). Probably, for me, the Diazepam would have been enough to prop me up on the extremely bad days, like Roarah mentioned about Xanax. And because it's an 'as needed' basis (well, it was for me anyway), you have all the power to make those meditation, yoga, exercise choices too. You sound like you are working very hard Happy43 to find your way through this mire. Credit to you.
Hi Panda thanks for your comments. Yes I do feel it's more of an as needed basis, good days and bad days. I am working hard to cope with all of my symptoms, both anxiety and physical, I hope the longer it goes on the more I'll adjust. I'm also finding it very helpful to talk to people on here, it's so nice not to feel alone with this disease 😊
I know exactly what you mean!!! This site is a godsend because absolutely no one else who doesn't have this understands. I too hope adjustment comes for you with time and the support of people here and in other ways in your life. It's a terrible amount to adjust to. I'm heading into my 3rd year with this and am still struggling with adjustment and even the need for new, additional diagnoses as we go. I'm thankful in a way I had other rocky areas in my life because getting through those gives a broader perspective and also the knowledge you can make it through.
Yes, it certainly makes sense. I have suffered terrible symptoms since hospital treatment - surgery, complications and drugs including the wrong ones in 2000. My life changed completely after the trauma, shock and stress to my body including pieces of internal dressing pack mesh adhering to my insides for six weeks after the dressing pack was withdrawn and courses of antibiotics I shouldn't have been administered with penicillin allergy.
It is certainly a balancing act and the worse thing is that others just don't understand and I get fed up trying to explain, so don't bother most of the time. Apparently, most die from what happened to me and there is no cure just trying to keep the body in balance, but so many things/stresses of modern life throw it out, not least EMFs and travelling/potholes, etc and Wi-Fi on buses and trains, shops everywhere, to name just a few. Thanks anyway and hope you find ways of coping with your health issues.
You sound like you got a really tough hand, Cann. And with things that should never have happened by the people you needed to trust most.
I'm very interested, do you think that the surgery and its complications and/or the drug reactions you had are behind what is medically wrong for you now?
Definitely, and I don't think the doctors would deny it, as they all say they are very wary of giving me any drugs or treatment due to not knowing how my body will react, so that says something.
The doctors at Bristol Homoeopathic NHS hospital before it was shut down due to cuts, who are conventional doctors all said it was the main cause.
There could have been a genetic tendency for auto immune, I don't know, but I had nothing like I have suffered since that treatment. It was just too traumatic, toxic and invasive for me.
Quite scary for the future if I think about it, but I mustn't think about it; it is the only way to keep going.
I think that all sounds really hard, Cann. And I know what you mean about explaining to others -- even close-others in our lives. It's impossible, especially when you only see them when you're well enough.
That feeling of 'mustn't think about it' has to be like a constant beat of a drum for you. I know what you mean. There are times I have no choice but to think about it all, when appointments loom, or medications are changed, but when there is a window of time when I might not have to, that might be exactly when to say "mustn't think about it"... Though if you do have to think about it -- we're here. : )
I know what you mean about appointments and medications and having to think about it.
It's funny how I felt relieved when I stopped having appointments and taking meds. I felt more in control.
I have to check what I eat/drink, etc. and when which is making me think to a certain extent, but using muscle testing to find out what and trusting my body rather than my brain makes me feel in tune with my body rather than always having to convince others including doctors what I am experiencing.
I know they can't do anything, so I felt what is the point.
For those who it all works for drugs and appointments that is fine, but it just doesn't for me. Good to have this forum to read and interact with, though, like you say. However, most of the time when I see discussion on drugs and side effects, etc. I feel out of it - though not necessarily a bad thing for me, anyway.
Do you mind my asking what your diagnosis is? Is it Lupus or another connective tissue disease? I see you've been here a long time -- since 2013...so, you've been suffering quite some time and I'm sorry to know that.
I do think it's encouraging to think about you feeling more in control. And I understand when you feel outside the box sometimes. If disease activity is lesser than drug reactive activity, that says something!
I've got a couple foreign bodies in me due to bilateral mastectomy and reconstructed implants after cancer. I am wondering (based on a lot of other evidence out there) that the foreign bodies we have received from surgery have wreaked havoc with our immune systems. Particularly those of us who are especially sensitive, not to mention things that have happened like in your surgery.. Again, I'm just really sorry to know things have been so awful that you're even affected by electro magnetic fields. I'm now having super-sensitivity to some kind of light or heat, so it's making me question things all the more.
Well, when I used to attend GP surgeries, my diagnoses included hypothyroidism, anaemia, thrombocytosis, hormonal imbalance, asthma, tachycardia, arrhythmia to name but a few and the drugs given just made me feel so much worse.
This was after the surgery, drugs and complications. Every test was normal before that.
My white count was double the amount it should be, too. I feel the doctors think it all happened as a result of the surgery, drugs and complications and there is little they can do when I react so badly to drugs; how do you treat that lot with drugs anyway without becoming a zombie!
I am sure you are right about the foreign bodies especially the bowel, as they had my bowel out of my body and 'put it all back and we'll see how it goes' to quote the gynaecologist whom I suspect knew little about bowels and the effect they have on our bodies when messed with.
Regarding the electro-sensitivity - many lupies feel they are the canaries of the 21st century - they feel the damage being done by modern technology whilst others don't feel it even though it is happening to them, too. Interestingly, I received an email just now regarding a talk about it all on June 8th in Horsham, Surrey. If I lived nearer I would attend. There is so much evidence of the damage of it all.
I have just checked the email again and the ES lecture is at Sedgwick Park Horsham, RH13 6QQ from 9.30-5.30 on 8th June with doctors and Professors speaking entitled 'Jenny Fry Memorial Lectures' presented by EMF Aware Sussex - you or others may be interested to go.
There are less places suitable to live for sensitive people like me now due to Smart meters, masts, etc. The trouble is many don't put their symptoms down to it and think it must be something else - so naïve!
Trauma is definitely woven into our stories! But the trouble is the traumas keep layering in, don’t you find? So instead of it being a single trauma or set of traumas, each passing year braids in depth to the previous ones 🙈 (I suppose the flip side is that what is also being braided in is a type of steely strength and the knowledge that experience brings ... but ugh, must we be traumatised first?!!! 🙄😬😊🦉🛌🛌🛌)
A paper I read recently identified systematic changes in gene expression in people with Chronic Fatigue Syndrome that may be responsible for the 'Post Exertional Malaise' symptoms. Unfortunately, what we can do about it remains a mystery x
numerous studies also show that exercise, diet and meditation can also change epigenics. And all of these are very affordable. I can post some links of NCBI studies if anyone is interested.
Please expand whitegato777... Would love to hear more about this! I have a gene mutation BRCA1. As well, I'm being investigated for another one right now.
Like i said. Ive heard lectures where people have said that but haven't found research. I think it effects epigenetic mostly. But it is being used to treat Inherited auto immune conditions
Ah! Sorry, didn't understand that epigenetic doesn't mean changes to the DNA code, but that "non-genetic factors cause the organism's genes to behave (or "express themselves") differently." (Wikipedia)
So our genes are not doing their normal job. A good example for me is I now absorb sunlight/UV differently in the last 2+ years. What would have taken 40 mins to an hour to create sunburn, happens in minutes. The cellar activity is definitely altered. And it is very much like a PTSD response. That tiny bit of sunlight creates over stimulation of cellular activity. With PTSD we are triggered similarly depending on the traumatic stimulus and origin. A car back-firing. A smell... And bam -- we're in a strong anxiety reaction!
I found it - milkwoman posted last week, here are the web details of the article -(sorry it’s not clickable from here, I’m on my phone!) take a look - v interesting reading.
Interesting - I’m pretty sure someone posted an article on here recently about genetics and the link with AI diseases, I’ll go back and see if I can find it!
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