Here goes! I wasn’t sure how to even start with this post as I’ve shared my health journey with you (see previous posts here) for the past few years now. Obviously I have suffered my whole life and have looked at many different avenues to find out what could be wrong, and after 29 years (very nearly 30!) I finally have a diagnosis. It’s been a really long journey and one that’s been incredibly complex and challenging, but I’m hoping now that I might be able to start getting the help I need and be able to live a bit more of an exciting life. So, without making this too long, I will start.
I was diagnosed with Hypermobile Ehlers Danlos Syndrome.
Hypermobile Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the least severe form of Ehlers-Danlos syndrome (EDS) although significant complications can occur. Common symptoms include joint hypermobility, affecting both large (elbows, knees) and small (fingers, toes) joints; soft, smooth skin that may be slightly elastic (stretchy) and bruises easily; and chronic musculoskeletal (muscles and bones) pain.
Although hypermobile EDS is thought to be a genetic condition, the exact underlying cause is unknown in most cases, but is often due to a mutation in one of more than a dozen different genes. The specific gene affected determines the specific EDS. Mutations in these genes usually alter the structure, production, or processing of collagen or proteins that interact with collagen. Collagen provides structure and strength to connective tissue. A defect in collagen can weaken connective tissue in the skin, bones, blood vessels, and organs, resulting in the features of the disorder. People may be misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome.
So those are a few pieces of medical information I put together in the quote to explain exactly what it is. Hypermobile EDS is something I was born with, and as there’s mild hypermobility on both my mum and dad’s side of the family (no EDS though), I inherited a gene from each of them which I believe is why it came out a lot stronger in me. Like it says above, I was diagnosed with M.E./Chronic Fatigue Syndrome when I was 14 and that’s plagued my life since, however I do believe I was wrongly diagnosed because I wasn’t given a reason as to why I had it, but now I know. There’s been so many things I’ve been diagnosed with separately over the years and nobody has ever connected them together, until now.
As you know, I paid to see Dr. Alan Hakim who is one of the UK’s leading experts in rheumatology and is heavily experienced in EDS. I did see a guy here in Bath back in November on the NHS, but unfortunately it was useless. He just told me I had hypermobile joints and that was it. He only spent about 10 minutes with me and I felt extremely dismissed. After having read on up on EDS for many years, and hearing other people’s stories, I felt it was so similar to what I was going through, which is why I saved up my money and waited numerous weeks for my appointment in London. I was pretty nervous about it, but that was soon put to rest when I met Dr. Hakim. He was instantly friendly, kind, reassuring and I felt safe in knowing he knew what he was on about.
We spent a good while discussing my symptoms and what I’ve been through in life, connecting the dots. He then examined me for quite some time, checking my joints, my structure, my skin etc. and even noticing things on me that were apparently not normal (even though I thought they were), so I actually felt like I was being taken seriously for once and not dismissed as a hypochondriac all the time. It was so nice to speak with someone who understood everything I mentioned and could even spot the problems himself just by looking or checking. He said my joints were unstable, they sublux all the time and they pop and crack, due the collagen deformity and not being able to hold them stable. My skin is stretchy and extends further than most peoples, and I suffer a lot of autonomic symptoms because my autonomic system malfunctions. There’s a lot to go into with that as it controls most of your subconscious bodily functions like blood pressure, sweat glands, heart, temperature, digestion, urination etc. so if you want to know more about it, click here for a detailed article to see what’s affected. Dr. Hakim said it was no wonder I was exhausted all the time and used the term ‘Tired but Wired’ which I thought was the perfect description.
There’s so much more to Hypermobile EDS than people realise though, as a lot just assume it’s being flexible and stretchy, but that’s only the surface since there’s a lot going on internally and behind the scenes that you can’t control. He’s recommended me some things to help and I will soon be seeing a chiropractor and physio to try and help with my joints and skeletal issues, and I’m currently going through tests on my heart to see if I have POTS (click here for a description) and just got finished with a 72 hour heart monitor that was on me over the weekend.
I will of course keep you updated on everything going forward, but I wanted to make everyone aware of the disorder because I’ve been in the dark for so long with everything, and if I can help anyone else out there, I’m more than happy too as it’s not easily recognised it seems. The good news is that Dr. Hakim did say that with the right treatments in place, there’s no reason why I can’t try to live a fairly normal life and I might not be in a wheelchair too early on in my life, so I’m quite pleased about that. Obviously that’s not set in stone as the future is unpredictable, but I’m hopeful. So, let me share with you my symptoms and what I go through in case anyone else out there is suffering.
My Hypermobile Ehlers Danlos Syndrome Symptoms:
- Hyper Mobility Syndrome (joints extend and bend further than normal)
- Sprained and pulled muscles (regular even from walking)
- Sub lax dislocations every day (especially hips and jaw. My ring finger often locks)
- Painful joints in general, they ache and pop, regularly are sore
- Extremely painful knees if it’s damp or cold, aches in the joints (hot water bottles help)
- Writing is difficult with a pen as my fingers and wrist hurts within a minute
- Reading out loud for a while hurts my jaw and causes a dull ache, as does chewing
- Can’t walk hills because of my hip joint (some sort of impingement)
- Stretchy Skin, skin takes forever to heal, blisters and bruises extremely easily
- Acne (since I was 13) (made worse by nuts, certain fruit, sugar, hormones etc)
- Used to have nose bleeds all the time as a child up until 18
- Ingrown hairs regularly
- Irritable bowel syndrome, bloating, had SIBO which was treated
- Gluten, lactose, sugar and egg intolerance’s and cornflour allergy
- Light headed, dizzy regularly & nausea, tendency to pass out
- Lower blood pressure, faster heart rate, can often be tachycardic
- Vertigo sometimes/extreme motion sickness (especially boats)
- Heart palpitations (more common around my period of with certain foods)
- Nerve pain (especially on my arms and scalp, feels like burning skin)
- Chronic Fatigue / M.E (diagnosed at 14)
- Don’t tolerate exercise well at all (struggle to breathe and then get painful muscles and exhaustion)
- Mild asthma
- Cystitis regularly (can only drink filtered water and a lot of it to keep it flushed)
- Migraines and tension headaches
- All chemical sensitivity (can’t tolerate sprays, paint, nail polish etc)
- Sensitivity to light, smells and loud sounds
- Poor circulation (regular cold hands and feet)
- Back pain, especially lower, and upper shoulder blades
- Accessory navicular bone in right foot (an extra bone that grew)
- Muscle spasms and jerks
- Severe heat intolerance (I get exhausted, angry, extreme sweat, can’t move and feel ill)
- Severe cold intolerance (I sort of shut down and enter a mild hibernation state)
- Can’t regulate my temperature well, it takes ages
- A couple of minutes in water and my hands and feet wrinkle so much it’s painful
- Temporary paralysis (read more on that here)
- Irregular heavy periods and female related issues
- Weight gain issues even though I don’t eat much
- Adrenal fatigue, constant Anxiety, panic attacks, social phobia (under control now)
- Sweat a lot even if it’s cold
- Tablets/medications effect me differently to normal people
- Overactive immune response (a simple cold is more like a severe flu for me)
- Sensitive teeth
- Stretch marks since I was a child even though I shouldn’t have got them
- Concentration issues sometimes as I can’t focus or take anything in at all
- Memory problems sometimes
- Sore throats
- Swollen glands in neck (often, have a permanent pea size one)
- Sometimes can be very clumsy
So as you can see, there’s a lot of symptoms here. Most of them are daily, or if not, they’re regular weekly so I never really have a string of good days in a row. There are private symptoms as well that I’m not willing to share as they’re personal. I even learned that anxiety is a part of it because of the adrenaline and overactive response system in my body, meaning my generalised anxiety is actually because of the EDS and that’s why I can’t just calm down. The fact that I’m basically 30 and I look about 18 is also connected to it because of the collagen. I’ve been told I will age really slowly so it’s going to take quite some time for me to look older, which I know I will appreciate when I’m older, but right now it is a bit of a hindrance, ha ha. Even my digestive issues are because of it. There’s so much to it that it’s been pretty overwhelming and it’s taken me a week to write this article.
I’m lucky that I’ve been able to create my job from home and become self employed because there’s no chance I can ever go out to a physical job in person as I just wouldn’t be able to do it. Just from walking too much (a regular amount to normal people) causes me pain and aggravation to the point where I’m limping about with hip and back pain, needing to rest for days after. Then I start to get blood pooling in my legs and arms which swells them up and causes throbbing and so much discomfort that I can’t even move them, like their disconnected from me. There’s a lot going on and I can now finally start making progress with planned treatments. Obviously there’s no cure and it’s something I have to manage and live with for the rest of my life, but I know that progress can be made to at least improve the quality of my life now – I hope.
I did want to point out that on my blog, I know I always show my best self, the version of me that’s always healthy and looking well, so a lot of people don’t think anything is wrong, but I class photoshoots in a similar way to acting as you portray a certain look in the photos. I’ve always been extremely conscious of my joints and skin in angles and pictures and on so many occasions I put any photos that show my joints hyper-extended in the trash can. I’ve received abuse in the past for the way my knees look or other skeletal issues that I cannot help, so I’ve just preferred to keep it hidden, however now that I know exactly what’s wrong with me, I say screw the haters and the abuse, I’m not worried anymore about showing my joints bent in a funny angle. I am me and this is how I was born, so any insults from anyone are not taken on board because I know they’re ignorant. Life is too short for nonsense like that. I’m thankful for all of the support that the rest of you give me though, so much so, that I am now comfortable sharing my problems with you all online, for the world to see.
Now regarding pictures, I haven’t got any in this post of my joints because I wasn’t sure how many of you would want to see. I’ve heard bending joints etc can make people quite squeamish and sick, which is why I wanted peoples opinion on if you want to see or not. I plan on doing another post next month with some updates on it and I can include photos there. I would love to know if any of you have Hypermobile Ehlers Danlos Syndrome or another type of EDS, or if any of your friends/family do as I’d love to be able to compare notes, chat, anything like that. I’ve found some forums, which have been great to read as I feel so familiar with other people already, however I haven’t joined up yet. Anyway, let me know what you think. Lorna xx.
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Lorna what an inspiration you are ! To share this will help so many. You must be very proud of who you are and what you achieve despite obvious obstacles. Keep positive and doing what you do which is working with what you can do and not what you can’t xxx
Author
Thank you, Ali! That’s really kind of you, I appreciate it. I try my hardest and work with the boundaries xx.
So glad you were able to get a diagnosis. Thanks for sharing your journey and I will be praying for you. I know this will help others.
https://www.kathrineeldridge.com
Author
Thank you, Kathrine xx.
I’m so pleased your condition has finally been diagnosed and you can receive the treatment you need. I just wished you could have got that diagnosis on the NHS years ago. I don’t just like certain bits of you, I like everything about you so please if you want to show us anything you want to, I’m interested in everything about you. You are such an inspiration to me thank you
Author
Thank you so much, David. That’s really so kind of you! I think it would have been a lot easier if I had got a diagnoses a long time ago. I know my mum used to take me to the doctors as a child when my knees would constantly dislocate and apparently they just used to say I would grow out of it. I don’t think it was very well known back then, but there’s so much more knowledge on it now that hopefully, things will be easier xx.
Wow, Lorna, that is some list. Do you really suffer from all of them? I get aches and pains but that is just old age. My problems are nothing to what you go through on a daily basis. Your attitude and courage is remarkable and an insperation to others..
I joined you on your recent live appearance and could see your many friends across the world. You really are popular and so you should be, how beautiful you look with a lovely smile which we don’t see in you fashion photos.
Now you have answers to your health I hope you can now fulfil some of your wishes for the future.💗💗
Author
Hi Norman, yes I do suffer from all of those, and more actually, but I didn’t list them all. It comes with many great problems since the Autonomic System controls so much. That’s so kind of you to say those nice things, thank you so much for that. I am generally a smiley person, but when you model for photos that are fashion orientated, smiling isn’t encouraged as it’s not a ‘serious’ way of posing, which is why I avoid it as much as possible for my photoshoots. How I am on live is how I am normally (on the good days anyway) xx.
So glad you got a diagnosis. Not knowing what the cause is can be almost has bad as the symptoms themselves.
Author
Thanks! Yes, it definitely can be for sure.
So glad you got a diagnosis. That so much for share it with us. Plus share the awareness of EDS. Since I have never heard of it before.
http://www.amysfashionblog.com/blog-home/
Author
I’m glad it’s taught you something today, Amy!
wow I’ve never heard of this before. Thanks for sharing! I learn something new today.
http://www.comfycozyup.com
Author
No problem!
Lorna, I’m so glad you finally have a solid diagnosis! All you can do from here is go up and feel better. ❤️
Author
I hope so! Thank you, John!
You were so brave to write this post. Thanks for sharing your thoughts with us. I’ve never heard it before. I wish you all the best for the future, we will stay with you.
Author
Thank you so much, I hope things will be ok!
I’m familiar with H.E and POTs but only because I’ve watched a few YouTubers who have it and they explained it pretty well. The reason why I looked them up was because I suffer from an immune disease myself, I have a severe case of Chron disease, my ankles and joints hurt all the time and I had one of my legs swell so badly I couldn’t walk for 2 months, so I can relate with many of the symptoms. I don’t know if it is for everyone, but for me it really helps to read as much about it and read how others deal with it. I had 3 chron related surgeries so far and I haven’t had a symptom free period ever since I was diagnosed 7years ago so I need all the immune/chronic disease advice that is out there. I know that it is not easy being diagnosed with something like this, but diagnosis is always the first step to achieving a more quality life.
Author
Sorry to hear you have Chrons. It’s such a bad one, my uncle has it so I know how it affects your life in a really bad way. That sounds awful having your leg swell up like that, gosh! Luckily when that happens to me it goes down the same day, I can’t imagine 2 months. My mum has Diverticulitis and that’s an awful bowel disease to have too, so I really sympathize with you having Chrons. I genuinely hope things will be under control for you xx.
Thank you, and thank you for writing this, I’m sure it will be helpful to many and it is a great way to raise awareness about chronic illnesses in general. Diagnosing can take such a long time, and the process can be so difficult. When it comes to chronic/immune illnesses many people struggle for a long time before being diagnosed, knowing that something is wrong, but having a hard time pinning it down, and even after diagnosis it takes time to figure it all out, so reading something like this is both educational and inspiring. I know these things aren’t the easiest to share. People don’t understand what an inner struggle a chronic illness can be and how much effort it might take to do the most simple things. Fortunately, I have good doctors so I feel that at least somebody gets me. I hope you’ll find a way to minimize your symptoms. Getting the right medication can take a while, but now that you finally have your diagnosis, hopefully it will get a bit easier. It’s amazing you were able to accomplished so much despite not being diagnosed all this time and suffering all those terrible symptoms. Hopefully, things will be a bit more easier now and you will
at least be able to feel more in control of your therapy/treatment options.
Author
Thank you so much! I’ve learned over the last 15 years or so to pace myself properly, or if I need to do something and go somewhere, I make sure I rest and save up my energy for a few days before so I can then use it all to do it, then I need to rest for days after. I have to learn to accommodate my boundaries and not push them, but sometimes it’s unavoidable. I genuinely hope it can help others as you’re right, it’s really hard to explain how hard just normal living and just actually using your body to be alive can be, especially when it doesn’t work properly. I’m glad you’ve got help too xx.
First of all, thank you for sharing your story and second of all, your story will help so many others and what an inspiration that is. I am so happy that you found a diagnosis for what you have been going through and I am sorry to hear that the first doctor you went to didn’t help you much. I am glad and grateful that you found Dr. Hakim. It’s nice to know that you can at least put your mind to rest in the sense that you can move forward and get help for what you truly need. I know it will be a long road ahead but know that you aren’t alone my friend. Thank you for sharing Lorna.
Maureen | http://www.littlemisscasual.com
Author
Thank you so much, Maureen! You’ve been so supportive since you found my blog, so it’s really nice to hear your words of encouragement!
I had never heard of EDS before but I have been reading and seeing a lot of it lately, on Youtube and blogs, so it’s wonderful that people are getting out there and sharing their stories and what works for them. I must be so frustrating for you to have all those symptoms and no real cause – it’s wonderful you now have a diagnosis and it’s opened up more treatment options for you – I hope they help to make things a little easier to deal with, even if there is no cure!
There is a lot online so you it’s great you’ve already started to find some supportive forums and groups 🙂 I hope things get easier for you as time goes on Lorna!
Hope you are having a lovely week so far and you have a fun weekend ahead of you 🙂
Away From The Blue Blog
Author
Thank you so much Mica, I’m hoping it will help others too 🙂 There really is so much online that I can look at and have been involved in so I’m definitely learning more everyday 🙂
I am so sorry to hear that you have to live with all these symptoms but I am glad that you finally got your diagnose. It is very brave of you to share something so personal with all of us. I hope that you will feel better soon!
http://whatmakesmesmileblog.com/
Author
Thank you so much xx.
Good to know you have found some answers for your questions dear. You’re such an inspiration. I wish you all the best in your treatment. Haven’t heard of this condition, but by the looks of it, it sure is a handful. But you strong, I know you are!
Also. it’s good that you have your blog as your outlet for your story. Someone with the same condition as you may stumble on your story in the future, and will be inspired by you as well.
Jessica | notjessfashion.com
Author
Thank you so much, Jess! I’m hoping so!
Your journey sounds so similar to someone very close to me. SIBO, FOB diet, Chronic Fatigue, to Ehlers-Danlos Syndrome. Did you have a genetic test done (it sounds like you di)? Or was it just a diagnosis based on doctor observations? Let me guess, you can pull your thumb back so it touches your forearm, right? Please keep us informed of any treatments (which your comfortable sharing) and whether they help.
Author
Hi Johny,
I haven’t had the genetic testing as what my symptoms are and the movements my joints do etc, they just prove I have it. I’m not familiar with the genetic testing here in the UK actually. Yeah I can bend my thumbs back to my forearms, I score 9/9 on the Beighton test for flexibility, plus more. My arms bend backwards, my hips constantly sublax with every step, my shoulders come out etc, it’s all so unstable. What EDS does your friend have?
http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/
Type 3. She also has always looked young for her age – one nice side effect at least.
Author
Yeah, the Type 3 is Hypermobile now as they changed the name. She and I are the same then!
So glad you have a diagnoses… I know it helps to have answers, sometimes. But I know many will benefit from you sharing your story. I love learning about the bloggers i follow – their real lives. Thank you so much for sharing such a personal part of your life with us. I have psoriasis and am always mindful that my knees and ankles often look bruised in my pictures (I usually wear leg makeup, which helps a lot, but you can still tell sometimes.) Yep, Those aren’t bruises, they’re psoriasis. And, I have dandruff from it too. It’s not fun, but it’s something I live with.
http://www.jessicabroyles.com
Author
Sorry to hear you have psoriasis, my grampy and my uncle both have that too, except my grampys was all over his skin from head to toe. I know Cara Delevingne and Kim Kardashian have it too. Honestly though, I never even noticed in your photos so you do a really good job of hiding it! I think it’s great to get to know other bloggers as well on a more personal level, so thank you for sharing that with me xx.
Oh gosh, Lorna, I’m so sorry to hear you have had to deal with these symptoms. But I’m also very happy for you to finally have a diagnosis. I had honestly never heard of this before. Thank you for sharing this with us, as I’m sure it will help people better understand their (or their friends) symptoms.
Author
Thank you, Lindsey, hopefully it will help get the word out and raise awareness of it xx.
happy that you may have a diagnosis for your illness
when I see everything you suffer, it hurts me
and scares me, because sometimes I have some of your symptoms
Author
Thank you! Definitely get checked if you get the symptoms all the time. I think everyone gets some of them from time to time, but if you have all of them on a very regular basis, might be worth looking into.
SO thankful for you that you were able to get a diagnosis and finally found a doctor who was willing to spend the time with you to uncover the root of all these issues. It makes me so frustrated how often people are dismissed and their symptoms waved away when there is truly something that needs to be addressed.
I can’t imagine living with everything you go through on a daily basis. You are AMAZING. I also appreciate your openness about this because it could honestly help someone else going through the same struggles. We’re rooting for you girl!
Susie | http://milehighdreamers.com
Author
Thank you so much! That’s what I’m hoping, I might be able to help other people in a similar situation. It is definitely frustrating when things get overlooked or not taken seriously for so long, it’s been a constant pain for me and at times I thought about giving up and just trying to live with it, but it kept getting worse so I couldn’t.
I am so sorry about your condition, I belive that everything will be better, sending you so much love!
Author
Thank you!
I am so glad you were finally diagnosed with the correct disorder. It really is dismaying how chronic health problems can take over your life and how you envious you can feel when everyone around you and online appear to live a healthy pain free life where they never have to think about their bodies.
I to suffered with chronic health problems from when I was 12 and for decades was diagnosed with all the wrong things. I was diagnosed with cystitis and then an autoimmune disorder called in interstitial cystitis but this was wrong as well. What I had was a damaged bladder from adhesions (among other things) and I had to have a procedure done a few years ago for a heart condition where it speeds up to 130 bpm for hours so I know the tired but wired feeling.
I really hope they find solutions for you that will allow you lead a life where you have to think about your body less and life more.
Allie of ALLIENYC
http://www.allienyc.com
Author
Gosh, you have been through it too! I know about IC as they thought that was something I might have had too, but it’s all connected. Are you doing a lot better now? It definitely can get so frustrating when you live such a restricted lifestyle and can’t do all the things everyone else does, but I try not to let it get me down at all and work within my boundaries as much as possible xx.
Thank you for sharing this!
Author
Hope it helps!
Firstly I am so pleased for you that you finally have a diagnosis that is firm and settled. I’m sure that that in itself will make a big difference to your life as you go forwards. Now that you know for sure what you can and cannot do and what will or will not happen you can at least plan ahead.
I really felt for you as I read through the list of symptoms though… even from an outside perspective that’s one hell of a lot. I hugely admire you for how you cope with all of this on a daily basis and it’s a great testament to you that you have coped so well with all of those things for so long without knowing for sure the reasons why.
It’s saddening to read that people have abusive towards you because of your joints or other features. I’m glad that you’ve got the strength of character and spirit to lot let them hurt you. You’re totally right to say screw them and to be confident in who you are – it’s for sure that the people flinging around the abuse don’t have even fraction of the positive qualities that you posses.
I’m certain that you’ll find plenty of ways to educate and inform on the issues that you are dealing with because I know that the desire to reach out and help people is so much a part of your nature. 🙂
On the specific issue of whether you choose to post photos of your joints, and/or other aspects of your condition, I think you must just do whatever you feel comfortable doing. I’d have no problem in seeing such photographs if that were to be what you chose to do but only if it feels right to you. All of us here have a lot of respect for you and, I’m sure, that would be reflected here in the comments section if you make that choice.
Frankly, Lorna, reading this entry is a privilege.
Author
Thank you so much, Steven 🙂 I’m glad you liked the article, it took a lot to write so I’m really happy that it’s been received so well.
You’re definitely right, it’s been extremely frustrating living with so many problems and constantly questioning why I have it, what’s wrong with me, and why can nobody help me or take me seriously. It mostly got to the point where I just thought it was normal to feel this way and part of getting older. The getting older thing was said to me so many times, when I was a kid it was ‘growing pains’ and when I’m an adult it’s because ‘I’m not a kid anymore’ so it’s been pretty ridiculous.
I’m doing a second post towards the end of the week and I will be including joint photos in this one, so hopefully it can help other people a lot more, as you’re right, I want to raise awareness xx.
I can only imagine your frustration at hearing the “getting older” line over and over again. That’s rather less helpful to hear than even a straight “don’t know” I would have thought? I mean I am at the age now where the things that happen to the body as we get older do begin to happen and they are all things that are completely trivial compared to what you’ve endured.
I’ll keep an eye out for your 2nd post on this and hopefully read it as soon as it appears. I should be a bit less busy by the end of the week when all this election stuff is over. 😉 LOL
Well done for raising the awareness of this condition – I am sure that people are going to benefit from this. Like many of your other readers who have said so; I had also not heard of it before either. xx
Author
Yeah, it wouldn’t have been so bad to hear if I was older, but I started getting those comments from doctors when I was about 24. At 24, I’m sorry, but I don’t believe you’re supposed to suffer pains because you’re getting older. That’s still really young! I mean I still class 29 as too young to be getting pains from being older, it’s madness! At least I’m enlightened now though 🙂 I’m happy to be able to teach other people about it too!
So good of you to share this, it would create awareness for people who have the same condition. I’m wishing you well Lorna! That is such a lovely back shot.
http://www.busyandfab.com
Author
Thank you! I am hoping so!
Oh no I’m so sorry with all you get through !
I hope you’ll know have all the treatments to feel better.
It may be really helpful for all who have the same symptoms as you.
xx,
Margot
https://troughthepasturesofthesky.com/
Author
I hope so! Thank you!
I’m so glad that you finally have a diagnosis and I’m so sorry that you constantly have all of these symptoms! Hopefully the physio will help a little bit 🙂 xx
Author
Thank you so much 🙂
You have endured a lot in your life, but you still manage to provide wonderful content online. Never let any disabilities or ailments derail your amazement. I am glad you were finally able to figure out what has bothered you for the entirety of your life. Even with this health situation, you still remain beautiful in looks and in personality. So keep going strong, Lorna!
johnbmarine.blogspot.com
Author
Thank you so much, John! That’s so nice of you!
That is, by no small margin, the longest list of symptoms I have ever seen.
The fact that you’ve not only survived, but flourished, tells me that you have almost unimaginable strength, and you’re only just now starting to find that out. Your thirties should be utterly wondrous.
Author
Thank you, Charles. That’s really nice of you to say. Quite a few people have said about the strength side of things, but I’m never quite sure what that means really because when you’re dealt with bad health and you’re suffering, what else can you do? You just have to get on with it and try and stay positive as it’s the only option. I’ve found no use in wallowing about and feeling sorry for myself, it just hinders everything, so I take inspiration from my nan who had M.S. (she passed away last year) as she never complained once, was always happy and laughing despite the pain and not being able to walk, so if she can do it, I sure can xx.
As someone who struggles with half as many symptoms of some sort of syndrome ( I went through and mentally ticked those I had off!), I am really amazed you keep going as well as you do. I am so pleased that you have had it identified and hopefully there is now a way you can control things. Your results have helped me understand that my seemingly miscellaneous conditions are likely to be linked despite what the doctors keep telling me. I spend a fortune on osteopath treatment and it keeps me mobile but dream of a permanent solution
Richard
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Thank you, Richard. I’m hopeful things will improve too!
Hello, fellow EDSer (I came here from the Reddit sub)! So, so glad that you finally felt heard. That is such a huge part of the chronically-ill life that many of the walking-well simply don’t understand. Just getting the validation that a solid diagnosis can bring is life-changing.
Anyway, I know this post is a few months old, but I hope you see this little chunk of unsolicited advice. If/when you do get physio, PLEASE make sure your physiotherapist is familiar with the unique needs of hypermobile patients and those with connective tissue disorders. HINT: if they suggest you try yoga/stretching, you’re probably in the wrong office! Ideally, you will find someone who is conversant with the Muldowney Protocol, which was developed specifically for Ehlers Danlos patients. It may not be an easy search, since the vast majority of physiotherapists work with acute cases, who they often coach to ‘push through’ the pain, and that mental framework can be hard to set aside when doing the ostensibly goal-oriented work of physio with a chronically ill patient. It’s worth it to look around until you find someone you can connect with (is that a pun? Y’know, on account of the connective tissue disorder? No?), even if it takes some time and energy (which is precious, I know, but we store it up so we can use it on things that matter, right?).
And please, whatever you do, stay away from chiropractic ‘care’. It is utter bunkum delivered by fanatics with little-to-no useful medical knowledge. It is dangerous even to people without easily dislocated joints/stretchy veins and arteries, but can be downright deadly to folk like us.
Best of luck to you on your health journey; I’m sure I’ll see you over on the EDS sub!
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Hi, thank you for your tips. Always nice to hear from someone else with EDS. My physio I have found is very knowledgeable on Hypermobility and has already examined me and everything, so I start with them in August. Regarding the Chiropractor, people do swear by them who I have spoken to, so it might just be person dependent. I haven’t yet found one, but I’m not crossing it off my list as I’m always open to trying anything and I would only find one who took care of patients with EDS. Good luck on your journey too!
Hey! You look beautiful. How do you manage your weight issues with EDS? Its really easy to gain weight. Any tips about your daily diet.
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Thank you! That’s very kind. Yeah, I go up and down about 8 pounds either way, but I had a lot of food intolerances so I am very restricted on what I can eat, which mostly keeps it at bay. I’m sure I would be a lot heavier if I didn’t. I find just trying to keep a balance, and because exercise is hard, and hormonal fluctuations, trying to limit processed sugar intake is the thing that helps me the most. I don’t cut it out entirely, but cut it down. I hope that helps!
I was searching for something related to H-EDS and found your post. I’m roughly thirteen years your senior and was diagnosed with H-EDS about fifteen years ago. I can tell you it was a massive relief to finally know what was going on. Most of your list of symptoms are far too familiar. While it has become more well known in recent years, EDS is still a mystery to most—I was the case study in my brother’s genetics course in medical school because no one in the school had ever met a patient with any form of EDS… they had a field day pouring over my medical records and films.
All that to say, don’t be discouraged. I still travel, even knowing I will have cankles rivaling a hippopotamus for size, my legs will hurt like the dickens, and my feet will be nothing short of a disaster as the soles blister. I still tote camera equipment when I travel because that perfect shot is worth the pain meds I’ll have to use later that night. I still wrestle with and pick up my nieces and nephew though it may cause me pain during and after. I explain, but don’t apologize for, my stretch marks, back pain, and such. If I have any kind of surgical procedure, I make my doctor refer me to a plastic surgeon instead of general surgery to keep scarring issues at a minimum. You, too, will continue to learn your limitations (I do not lift heavy things—I am strong enough, but I easily injure myself), the calculated risks that tell you what is okay to attempt (I live an hour from some of the finest skiing in the world—no, not an option), and when to choose physical pain and/or discomfort in exchange for a fuller life (climbing way too many steps to stand on the Great Wall of China was worth every ounce of discomfort!).
But just knowing there was an explanation for everything I had been experiencing all my life was the biggest blessing. It’s not a deficiency in who who I am as a person that makes things impossible for me that are “normal” for many others. Nope, it’s a genetic mutation over which I had no control. As far as I’m concerned, it’s part of what makes us unique and special. After all, having skin with a velvety feel (something I thought was normal for everyone until I was in college) is quite a perk. 😉
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Thank you for your beautiful comment, Beth 🙂 It’s always lovely to hear from people in the same situation. I’m the same as you, I work with my limitations and sometimes other things are worth the suffering if they’re amazing. Like I went to a Shawn Mendes concert and had to stand for 2 hours. My hips were hurting so bad by the end and I had pain for weeks after, but it was SO WORTH it!
I agree with you on the perks of it too, looking younger and having soft velvety skin. I’m not discouraged anymore, I’m finally happy to have the diagnoses and working around what I can and can’t do, I make it work. I’m not apologetic about what I can’t do, as it’s not my fault, so I make do! I really hope you’re well and doing ok, and I hope we can keep in touch!
I just found your amazing story. Felt like I was reading an autobiography! Simply incredible. So happy you found answers and support for those answers. I am currently on the path of finding a doctor who will take me seriously.
I at least have an appointment with a geneticist in September to check for the specific genes of hEdS.
Thank you so very much for sharing your journey.
💚☯️💜
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I’m glad you resonated with it! And I hope you’re able to get a diagnoses or something figured out!