Emotional trauma and autoimmune disease - PMRGCAuk

PMRGCAuk

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Emotional trauma and autoimmune disease

Jennyhampshire profile image
48 Replies

Hello

I have been a member of the site since diagnosis in Nov 2017 and can honestly say reading the posts everyday helped me more than any rheumatologist/doctor. From 30 mg to being stuck at 7 now with more than a few bumps along the way life’s been a bit rubbish at times but reading other people’s experiences helped keep me sane.

My reason for posting today is to say that I have recently told my partner and close friend about an assault that happened in my early 20’s. (I am now 57) It was hard to share this as It had been a long held secret, I felt it was “my fault” I now realise that it was rape and have been living with guilt, shame, blame and anger since then.

I will try and keep this short but I have been reading up on the connection between trauma and autoimmune diseases. I know one question is never answered and that is “How did we get this disease?”

It makes perfect sense that with the physiological symptoms going on in the body from the anger/stress over the years that the body just starts to get sick.

Since telling my partner and friend, I have found a sense of calm and happiness that I have not experienced since before it happened. Physically it has also helped in a way that I can move my arms/legs more freely as well which again is a new feeling I haven’t had for such a long time.

If you have any unresolved trauma in your life that you’ve held onto that you don’t think you can share or don’t want to make a fuss please try and speak up! It’s hard but so worth it and hopefully it might help to get on top of this disease we all have in common.

My apologies if this has upset or offended anyone out there. I realise the content is not exactly light chatter but then maybe that’s the problem?

Thank you for reading this

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Jennyhampshire profile image
Jennyhampshire
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48 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jenny,

Very brave of you to tell us about this very traumatic episode in your life, and I’m sure all of us would applaud you for doing that.

And no, it certainly wasn’t your fault; hopefully now you realise that and have unburdened yourself, you can get on with a better, more peaceful and rewarding life.

Take care.

🌺

Jennyhampshire profile image
Jennyhampshire in reply toDorsetLady

Thank you as always lovely words xx

SnazzyD profile image
SnazzyD

Well done, you made a huge step. You may find the book The Body Keeps the Score - Mind, Brain and Body in the Transformation of a Trauma by Bessel Van Der Kolkata. It scientifically explains the effect of unresolved trauma has on the body. I found it a bit hard going at the beginning and at times it can seem that it doesn’t apply to you, but it all becomes clear and is very positive. It goes into things you can do for yourself.

Jennyhampshire profile image
Jennyhampshire in reply toSnazzyD

Thank you so much. I will look out for that one and your right I recently listened to a pod cast on iTunes called baggage reclaim and while the situation is somewhat different you can still relate the mental effect to yourself x

Just ordered the book and it’ll be here Thursday can’t wait to start it 👍x

Daisy246 profile image
Daisy246 in reply toSnazzyD

My GP suggested I read that book!

Nerak12 profile image
Nerak12 in reply toDaisy246

It’s very good and I found it very helpful after a particularly traumatic bereavement.

Jennyhampshire profile image
Jennyhampshire in reply toSnazzyD

Fantastic book I couldn’t put it down thank you for the recommendation. It should be essential reading for everyone and it’s certainly helped me understand things more clearly x

YuliK profile image
YuliK

Jenny keeping things bottled up for so many years it’s not good for anyone’s health.

I can’t believe that there is one woman posting here who has gone through life without some sort of sexual harassment.

I’m 77 years young , 😉 and I can still remember when I came home from school on the bus , I must have been 9 or 10 years old, an old man ( probably not so old, but seemed old to me ) was whipping his beige overcoat open and flashing.

What does a little girl of that age do.

Of course over the years, I had sexual harassment, including the Father of a school friend, who kindly offered to drive me home after visiting my friend.

Nothing happened to me, but I was lucky to get out of his car very quickly.

I was too scared to tell my parents,

Maybe all these experiences caused my PMR and other autoimmune problems which I have.

In the meanwhile Jenny, please feel free to talk to us.

Keep safe

YuliK 😷

🌹🌹🌹🌹🌹

Jennyhampshire profile image
Jennyhampshire in reply toYuliK

I can’t believe I also seen a flasher (as we laughingly called them) when I was about 10 as well and also who would you tell?

Hopefully kids seem to be more aware that it’s not right now so they’d feel more comfortable telling.

Thanks for the offer of talking it means a lot.

You take care as well x

Jennyhampshire profile image
Jennyhampshire in reply toYuliK

The book recommended to me called The Body Keeps the Score by Bessel Van Dee Kolk is brilliant I’ve just finished it and what an eye opener I can highly recommend it xx

Gumnut profile image
Gumnut

Dear Jenny well done for speaking up. To your partner and to us. And so glad you feel a sense of release and calm. No-one should suffer in this way. I too went through trauma as a child and protected my mother from my father. We all move on? Does stress and hidden trauma contribute to PMR?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGumnut

Stress ( mental, physical, physiological) most certainly - and with hidden trauma comes stress.

Jennyhampshire profile image
Jennyhampshire in reply toGumnut

It seems to make sense to me that it actually does now. I was feeling exhausted from my middle 40,S looking back the PMR started in my 50,s. Like every woman I carried on which only made it worse and the doctor saying it was my age 😤. Since I have shared this I still feel physically and mentally so much better so that sort of reinforced the idea of this trauma causing it.

Thank you for your kind words x

yorkieme profile image
yorkieme

You are an extremely brave lady for any number of reasons and not least because the more often people find the courage to reveal such nasty experiences to the rest of us and allow us to learn from it but also for the many years that you have spent trying to cope with it alone.

How you move on from here with this new found enormous strength and power is for you to decide but I wish you every good wish.

Jennyhampshire profile image
Jennyhampshire in reply toyorkieme

Thank you so much.

I have been so lucky to have had such a positive response on here it has been a wonderful.

I also have a supportive partner and friend to share this with me along the way so the only way is up now for me.

SheffieldJane profile image
SheffieldJane

I am happy for you Jennyhampshire. I am a strong believer in the therapeutic benefit of sharing these appalling experiences. I also share your conviction that this assault is a significant factor in your current illness. I would urge you to carry on this great healing work by going into therapy for your trauma. I think your post is completely appropriate here as your experience will be shared by others and your stepping into the light will be inspirational. You have taken a very significant step towards your own recovery, a hard, brave step and I applaud you for it. 🌈🌸

Jennyhampshire profile image
Jennyhampshire in reply toSheffieldJane

Thank you SheffieldJane. I have followed your posts over the years and you always seem to say the right thing. I never thought when I joined I would have been revealing all this and now having your advice been given to me which is truly appreciated.

I’ve got a phone therapy session with a counsellor on Friday and actually looking forward to it xx

SheffieldJane profile image
SheffieldJane in reply toJennyhampshire

I wish you a wonderful therapist who is equal to undertaking this journey with you. It will not be as shattering as the first disclosure but it will help you to grow in strength, confidence and resilience and health.

York54 profile image
York54

Jenny how brave of you to share this with us. I believe that trauma and stress plays a very big part in autoimmune illness. So glad you now feel unburdened to have spoken to your partner and friend. I too applaud you xx❤️❤️

Jennyhampshire profile image
Jennyhampshire in reply toYork54

I am so glad I did it and now feel like “me” at last. I’m keeping my fingers crossed for reduction to 6.5 from 7 mg end of August after trying twice 🤞xx

Rosbud profile image
Rosbud

How wonderful that you felt able to share this with us , I hope you continue to heal both physically and emotionally, this forum is the best thing that’s ever happened to me and helps more than any Dr could ever wish to help , sending you big Angel hugs x

Jennyhampshire profile image
Jennyhampshire in reply toRosbud

Thank you Rosebud every message I read in response to my post is reinforcing this happy calm body and mind so I’m making the most of it xx

Jennyhampshire I am sending you a hug over the Internet. I am fortunate to have nothing to compare in my life but I am so pleased to hear of the effect that sharing your experience has had. I hope the improvement in your health will continue and enable you to enjoy the rest of your life xx

Jennyhampshire profile image
Jennyhampshire in reply toDogAgilityObsessed

Thanks DogAgilityObsessed. It has been so good to share this and feel the benefits of it. After three years (Diagnosis 2017 but had it at least 18 months before that) of PMR I’m hoping this will help me along xx

artisam profile image
artisam

Brave, brave lady. Telling your friend and partner must have been so hard for you, but the immediate release you are feeling is your reward. Thank you for sharing - there will be others I am sure who will take your courage to face their own demons. You can now start your journey to real mental and physical health - don't do it alone. I wish you well xxx

Jennyhampshire profile image
Jennyhampshire in reply toartisam

Thank you artisam it was hard after over 30 years of keeping it in definitely but as you said the rewards are already with me so from that can only move forward.

Viv54 profile image
Viv54

Hi Jenny , you have been really brave to tell us about this . Think now you have taken this huge step things will be easier for you . Best wishes Viv x

Jennyhampshire profile image
Jennyhampshire in reply toViv54

Thanks for your kind wishes Viv54 the hard bits over now x

Viv54 profile image
Viv54 in reply toJennyhampshire

💕

MrsNails profile image
MrsNails

Dear Jenny 🌸

How very brave & wise of you to share your past trauma with your friend & partner and then to include us your PMR/GCA Family, l hope you feel lightened by the sharing of this & it not only helps you move forward but it also helps others who may have been suffering silently.

Bless Your Heart Jenny

Much Love 💗

MrsN

Jennyhampshire profile image
Jennyhampshire in reply toMrsNails

Thank you Mrs Nails your words are very kind and supportive. I never realised how therapeutic it would be sharing this online with everyone on this wonderful forum

Much love back 💕

PMRpro profile image
PMRproAmbassador

Onwards and upwards - and thank you for feeling this is a safe place to speak xxxx

Jennyhampshire profile image
Jennyhampshire in reply toPMRpro

It is a truly wonderful place to share xxx

Blossom20 profile image
Blossom20

Thank you so much for sharing! This is so important and w ill help lots of other people who have all that trauma trapped in their bodies. Amazing how your body responded by feeling freer and you felt lighter. I'm so pleased for you, well done!

Jennyhampshire profile image
Jennyhampshire in reply toBlossom20

Thank you Blossom it has been a great help xx

Horsewhisper profile image
Horsewhisper

Dear Jenny, such courage to share this and to talk it through with your partner and friend. I am so sorry that you had this horrific experience and suffered for so many years. It seems that the effects of trauma resonate with many people here and I am so pleased that you are experiencing some physical relief already. I firmly believe that the body “holds on” to the residue of trauma, whether it be physical, emotional, or mental (or a combo of any of these.) This locked in residue may well contribute to a range of chronic diseases including autoimmune conditions. I think that with acknowledging the trauma, coming to terms with it, along with a combination of appropriate therapies (talking, counselling, meds, well-being, diet, exercise etc etc) you can give the body and mind the opportunity to try and get better. These are purely my opinions - I am not a trained professional! I’m just somebody who is treading a similar path to many people here and trying to improve my health. Peter Levine’s book “ Waking the Tiger” covers healing from trauma quite well. I hope you continue to feel better and sending love and best wishes xx

Jennyhampshire profile image
Jennyhampshire in reply toHorsewhisper

You explained that beautifully, thank you for taking the time to send your message.

I will look out for the book now on Amazon I’m not working now so plenty of time to soak it all in xx

nuigini profile image
nuigini

Thank you for your trust.

May the sense of calm, happiness in mind and body continue.

Jennyhampshire profile image
Jennyhampshire in reply tonuigini

Thank you nuigini I feel that it will only get better now xx

Knitwit2020 profile image
Knitwit2020

I agree with all the previous posts..you are a strong Woman who came to a safe place to speak your truth...where you have found an enormous group hug of love and respect. Stay strong , keep well. Move forward with your head held high and be grateful for each beautiful day. Sending you much love and respect..KW2020

Jennyhampshire profile image
Jennyhampshire in reply toKnitwit2020

Hi Knitwit What a lovely uplifting message you have sent. I am overwhelmed by the support I have received and am feeling blessed. Thank you xx

Lonsdalelass profile image
Lonsdalelass

Well done Jenny, in opening up after all this time and finding the courage to share with us all. You must feel like a weight has been lifted now, how wonderful and I'm so pleased you're feeling better as a result. You have been very brave.

Jennyhampshire profile image
Jennyhampshire in reply toLonsdalelass

Thank you Lonsdalelass the weight has certainly been lifted and life feels so much better. The support from on here has been invaluable xx

123-go profile image
123-go

Dear Jenny, how I feel for you. I never experienced anything as horrendous as you, but one of my earliest if not THE earliest memory I have is of an uncle exposing himself to me and accompanying this with inappropriate touching. This carried on for what must have been a couple of years. Even though I was so young I somehow knew that this was wrong and, like you, was unable to tell my parents not having the words to express myself. It wasn't until years later that my sister (fourteen months older than me) told me that she had suffered this from the same monster. We both believed that even though we were so very young we should have stopped it. I know differently now but it is still a time that haunts me over 70 years later and right now I feel so much 'lighter' having told my story to the wonderful friends who I have never met in person but feel like I can tell them anything without being judged.

Who would have thought that people in this group would turn out to be our very own therapists? Aren't we fortunate to have found them?

Jennyhampshire profile image
Jennyhampshire in reply to123-go

Hi 123-go thanks for your message and I am so sorry that you had to go through such an awful experience at such a young age.

Sharing here like you has been such great therapy and I’m reading all the lovely messages all over again and feeling understood. I am glad that you too are getting comfort here and you are feeling ‘ ‘lighter’ we are all here together and I give thanks every day for this.

Sending love to you xx

YuliK profile image
YuliK in reply to123-go

Oh dear 123-go

I can understand completely how your dreadful experience can still be stored up somewhere in your memory.

It is very very sad that we have these memories, but at least we can make sure that our children and grandchildren are aware what can happen to them. Obviously in a gentle way, not to completely frighten them.

I was never warned. So I must have been very very confused.

You have a lovely group of people here and they give such sensible and sensitive advice .

Keep well and stay safe ...

Hugs

Yulik 🌹🌹🌹🌹😷

123-go profile image
123-go in reply toYuliK

Thank you so much for your kind, supportive words.

It wasn't only reading Jenny's post that made me more sure than ever that PMR can indeed be caused by stress and trauma.

Curious101 profile image
Curious101

Hi there, are you still on this site? I have CPTSD and with Gabor Mate's book on the Myth of Normal, I am resisting my GP and her Rheumatologist's encouragement to start Steroids after a diagnosis of PMR 3 weeks ago. I had a first acupressure session last weekend and it was very helpful - identifying unhelpful thought patterns which have kept me stuck for a looooong time... Then 2 days later was the worst day of PMR pain I've had and I got close to throwing in the towel and starting on the prednisolone, but resisted. By the end of the day the pain had lifted, back to a low humming level which is my baseline.

So I am sure that my PMR is trauma-related, and wondering how on earth stuffing the pain down inside further with steroids can be the solution? Of course if I develop GCA then I'd take them like a shot, but meanwhile I'm going back for acupuncture, starting mind-body therapy, continuing the Group Therapy I do weekly and both 12-step and other recovery programmes for alcohol addiction which was my "solution" for the emotional pain for far too long.

I'd love to hear from others with PMR who have PTSD/CPTSD or other mental trauma histories and/or history of addiction.

And I'd love to hear from anyone who has managed the symptoms without steroids...

Thank you.

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