10 Hypermobile Ehlers Danlos Syndrome Life Hacks

10 Ehlers Danlos Syndrome Symptom Hacks

As you know, I was finally diagnosed with Hypermobile Ehlers Danlos Syndrome back in April after a whole life of problems. Getting the answers I needed was such a weight lifted off my shoulders and it’s allowed me to be able to find out more and more things about the condition and help my symptoms. As I suffer from a whole range of symptoms which are associated with EDS (see my post here) I thought it would be a good idea to put a huge article together with tips and tricks on how to combat some of them. A lot of you have asked for more posts on the condition, so I’ve been spending a couple of weeks putting this one together. All of these tips here for each symptom are based off of my own experience, and what I find helps me. In this list you will find:

  • Knee Ache From Cold
  • Overheating, Temperature Regulation & Sweating
  • Swelling Arms Or Legs
  • Digestive Issues
  • Bladder Irritation / Cystitis
  • Subluxing Pain / Joint Pain
  • Migraines, Tension Headaches, Dizziness & POTS
  • Hormone Regulation & Acne
  • Ingrown Hairs & Blisters
  • Chemical Sensitivity
  • Supplements

Obviously we are all individual and what works for me might not work for you, but they’re general things I’ve found extremely helpful. I would love for this to be a really comprehensive guide in the future though, so if you have any of your own methods and coping strategies, please comment below! I hope these 10 life hacks are useful!

Knee Ache From Cold

One thing I regularly get is knee ache. Since my knee joints are extremely loose, the damp and cold seems to get deep into the joints and bone, so on a damp evening or if I have gotten cold, my knees will ache right to the bone and as a child it used to make me cry. The only thing I have found which relieves this pain after a few hours is heat. I put a hot water bottle on my knees and wait for it to warm up the joints and this gives me relief from the aching. I try as much avoidance as possible initially to the point of always wearing jeans in the evening, never getting damp or cold on the legs etc, but if it happens, a hot water bottle is my best friend. It’s the only thing that works. I never apply ice or cold packs to aching bones that are from the cold or damp – it causes more pain. I can get this in my elbows too sometimes, but that’s a lot less frequent than my knees.

Overheating, Temperature Regulation & Sweating

I struggle with this hugely! Currently in this heatwave of 30C, I’ve barely been leaving the house and I’ve been trying to keep cool in any way possible. The things I use in order to help cool me down are:

  • Cooling pads/towels
  • Cold water on pulse points
  • Ice water bottles
  • Damp clothing and fans
  • Cool Mist Fans
  • Cold compress on the back of the neck
  • Lots of thin layers of clothing

Trying to sleep in this heat is a joke. It gets me angry and it makes me feel sick, so the one thing I have been doing is making my clothes wet with cold water and sleeping with a fan on me. The damp clothes make me cool when the air blows. I don’t know how safe this is and it might not be suitable for everyone in case you suffer with temperature regulation issues or skin issues from too much water touching it (I do), but it’s the only thing I can do. I just make my t-shirt damp and it cools me down.

Applying any amount of cold water to my pulse points like the wrists, feet, and neck is ideal too. A cooling pad or cold compress works well on these areas. Lately I’ve been keeping bottles of water in the freezer which are now ice bottles and keeping them close to me to cool me down once I start to overheat and feel sick. Truly the only option in emergency’s though is a cool shower. It instantly cools me down and if I have cold hands and feet, that helps all round.

For temperature regulation, that’s a tricky one. I can go from a warm room, to outside, then instantly start shaking and feeling ill because I can’t regulate the temperature change. The same happens if I go from cold outdoors to inside warmth, I start to sweat and feel dizzy. What I’ve found works well is wearing lots of thin layers, this way I can remove layers to adjust to the temperature. If I know I’m about to go outside, I will put more layers on just before leaving so that I stay warmer, or if I’m about to go inside, I will take layers off before I enter. It can be tricky to get the adjustment right, but the lots of thin layers helps a lot as it’s changes in increments, not large shocks.

Now for the sweating, I haven’t found anything that will stop it, but keeping cool is the key thing obviously. I use a 48 hour deodorant, I wear as much linen or cotton clothing as possible so my skin can breathe, and I wash 1-2 times a day to keep it under control. I would definitely love any other ideas you have though if you suffer with it! I’m always open to suggestions. If you are sweating a lot and starting to feel unwell, be sure to read the section about electrolytes in the POTS paragraph.

Swelling Arms Or Legs

I think it’s quite common for people with Ehlers Danlos Syndrome to swell up. I suffer with this regularly and for no reason at all my arms can enlarge, my rings get tight, and they ache and I can’t move them. The same thing happens with my legs. I used to think this was a type of paralysis, but after seeing the specialist in London, I found out it’s a circulation issue and the blood starts to pool in your limbs instead of flowing seamlessly. This happens to me if I’ve done too much walking or used my arms a bit too much, these are the steps I follow to alleviate the blood pooling.

  • Raise my limbs. Either keeping the arms above my head or lie down and keep my legs elevated above the waist so the blood can run back down. Gentle massages also help.
  • Apply a cooling towel or try my best to keep the limbs cold. They swell up more when they are hot.
  • Remove my rings and bracelets if this happens as it can restrict the blood flow to my fingers. Sometimes it can be hard to get them off so Adam will help me by moistening the skin.
  • Rest them as much as I can. I always get this from overuse (that doesn’t mean I’ve done extreme exercise, it means my body just decides I’ve used my limbs too much) so they need to rest and recuperate in order to be ok again.

I’ve found by doing these things, it’s a much quicker turnaround to getting the use back in them and it stops the aching. I usually get a pulsating feeling and an ache which really frustrates me because it feels like my arms/legs might explode, they often spasm which is not very nice either, but the elevation helps hugely. I get a cool, tingling sensation and I know the bloods going back to the body. I haven’t had a full body paralysis in a long while now, and that one I haven’t found any remedy for at all.

Digestive Issues

This one is tough. You all know I’ve had digestive issues for so long and it was one huge journey trying to get that sorted out. I had to spend a lot of money in order to figure things out properly, but it was worth it in the end because 90% of my symptoms are gone now! I only get problems if I have inflicted it upon myself mostly, so let me share with you what’s helped me.

  • Finding out my food intolerance’s and allergies and eliminating them
  • Getting tested for SIBO and treated with Rifaximin (if you have it)
  • Taking a good pro-biotic that my body responds to
  • Using digestive enzymes with every meal

So for me, finding out my food intolerance’s was a big one. I am very sensitive to gluten, I’ve had to go completely gluten free. This has helped hugely because I rarely bloat now unless I’ve eaten something with gluten in. I’m allergic to cornflour, so that has to be strictly removed from my diet entirely. I’m not so great with eggs, they constipate me terribly, and I have to be careful with cows milk so I have the lacto free options (not soya). Since removing these trigger foods, things have been so much better for me in general. I also have to be cautious not to eat too much sugar and spike my blood sugar. Definitely find out your intolerance’s.

I also had SIBO last year (small intestinal bacterial overgrowth) which was causing havoc in my digestive system. Since I had been given a lot of tablets to reduce acid in my stomach after having gastritis and my intestines were inflamed from eating foods I was intolerant to, I was letting a lot of the bacteria from lower down into the small intestine where it should not be. This was causing over production of methane which was causing me extreme gas and bloating, and it was giving me a lot of pain. Since we have stretchy intestines anyway, it was incredibly painful. I was treated with Rifaximin and it worked well. I recommend this antibiotic because my gastroenterologist said it works well in EDS patients and is localized to the digestive system only, so you rarely get other side effects – I can safely say I suffered none.

Finding the right pro-biotic is essential too! I took Symprove for around 8 months and that helped at first, but my body got very used to it and started getting a bit strong for me. I’ve since swapped to Bio-Kult Advanced Multi Strain Formula (as recommended by my naturopath) and that seems to be doing a good job. It’s got 14 freeze dried bacteria strains in it and is very gentle on my stomach. It’s a capsule too so it’s easy to take. I feel like this helps keep a good balance of bacteria in my digestive system as I struggle making the good stuff on my own.

Finally, digestive enzymes! I left this until last but it’s actually the most important. I can’t eat my food without them! They have been a life saver – seriously. The ones I use are called Phytozyme by Biomedica and it’s the best one I have ever tried. They work by digesting your food as they have loads of enzymes which break down different food groups. I don’t seem to make enough digestive enzymes on my own and I struggle with eating food as I get gas, bloating, uncomfortable and some pain, but since I take these with my meals, any problems are minimal. I’ve tried my meals without them and I know instantly that I need to take them as I start to feel pain. If you struggle with food too and being uncomfortable after meals, I recommend these particular ones!

Bladder Irritation/Cystitis

I’ve suffered with this since I was a child, so I know how frustrating it can be. It’s only recently I was recommended something that really helped when I was suffering cystitis and that is:

Potassium CitrateI have the powder and I mix some up in water and after about half an hour the pain is gone. It works by making the urine less acidic and flushing the bladder through. It’s literally been amazing! I know it comes recommended by a lot of people, so that’s a tip I can pass on if you’re suffering.

Filtered water only – I drink 2 litres of filtered water a day as I get cystitis if I drink other things. I’m ok with fresh (non acidic) fruit juice, but nothing else. Filtered water is a must and I make sure I drink enough of it to keep the bladder flushed through. I get pain if I haven’t drank enough, that’s for sure. This is the Bobble bottle I use to take with me at all times as it filters on the go.

Cotton underwear and looser clothing are important – If I am not wearing cotton underwear, the area doesn’t breathe very well and it causes me pain, as it does if I’m wearing tight jeans and sitting too long. If there’s pressure in that area for a length of time, it starts my cystitis off, so it’s important I try to avoid triggering it like that. I avoid underwear like thongs too and go for cotton briefs.

Be careful with soaps – I can only use one soap and that’s the original Dove body wash one. I think Femfresh is supposed to be good too, but I avoid any harsh chemicals and anything heavily scented. This causes irritation on the skin and again, gives me pain.

Relaxation techniques – I spoke to a few people with EDS on the support groups and I realised that a lot of us are quite tense without realising. Due to having to hold our joints in place so that they don’t fall out, subconsciously our muscles are quite tight. This happens in the pelvic region too, which again causes me cystitis so I try to relax as much as I can.

Subluxing Pain/Joint Pain

This is a tougher section as most of us are dealing with this multiple times a day. I’ve woken up on many occasion after having slept on my shoulder while dislocated and the pain is terrible. I’ve also woken up with a dislocated toe too. But throughout the day, joints will sublux and cause problems, my shoulders, back and hips cause me the most issues, so the only thing I know of to help is splints and tapes. You can get great splints which work on your joints to keep them in place and while they may not be entirely comfortable, they are helpful. Taping on the larger joints and muscles can be of benefit too. I know the pain gel with anti-inflammatory in it is great too, that will help take away joint and muscle aches. It’s a temporary relief, but I haven’t found much else to be honest. Here’s a few tips below, but other than that, there’s not a huge amount that can be done.

  • Being extremely careful and aware of your body
  • Moving slower
  • Strengthen other muscles with a physio to try and stop the subluxing in the first place
  • Trying not to over extend joints
  • Avoiding bad posture positions
  • Not lifting anything too heavy

Migraines, Tension Headaches, Dizziness & POTS

Where do I start with this one. It’s a regular issue for me, so I’m going to split them into two sections and deal with the migraines and tension headaches first. These can be such a problem that I don’t see much point in a rubbish quality of life like that when I end up with migraines multiple times a week. One of mine can last 2 days and the pain behind my eye, the nausea, the mental fog and the sensitivity to movement and light is so bad, sometimes I’m in a dark room lying down all day. I can’t stand it. Most of these are related to my hormonal imbalance, however the tension headaches I get because of my muscles and posture can lead into migraines too. The only thing I know to do with awful migraines is to try and take the correct painkiller for your body (it varies from person to person) and get plenty of rest, water, and sleep until it’s gone. If it’s tension related, I need someone to massage, stretch, and manipulate the muscles in my neck and shoulders. I have a troublesome left trapezius muscle and it’s the root of a lot of my migraines, so Adam and I have been working on releasing it as my neck is so tight. A lot of us with Ehlers Danlos Syndrome hold our muscles tight to keep ourselves together, but this causes painful headaches, so loosening it up is key.

Key things to avoid: not getting enough sleep, slouching over a computer/phone, sitting or sleeping in an awkward neck position, bending down too much (it creates head pressure), not drinking enough water, over using the neck/shoulder muscles, not regularly massaging them.

When it comes to dizziness and POTS symptoms (Postural Tachycardia Syndrome) it’s incredibly important for me to look after myself and work within my boundaries. I don’t have POTS disorder (I was tested) but due to the lack of restriction in my blood vessels from the collagen defect, my body doesn’t get my blood back up to my head quick enough so I get dizzy and can black out. This can be scary, but once I knew what I was dealing with, it became easier. Obviously if you are getting symptoms of dizziness and blacking out and haven’t been to the doctors, please go. It can always be a sign of something else, so it’s best to get checked.

Key things to remember: don’t get up fast as this will cause dizziness and a drop in blood pressure, always get up slowly. Not staying hydrated enough will cause issues as water helps greatly at balancing your blood pressure. Remembering to take my electrolytes too if it’s a bad day as our autonomic system can malfunction and I need to balance out the important electrolytes (choose one that’s good and not specifically for sports and don’t get one with sugar, so no sports drinks – I’ve got this one). Avoid any triggers as well as I know some foods, smells, watching things that cause vertigo or going on rides etc. can cause dizziness, vertigo attacks, or passing out, so I’m always being cautious what I am doing. If I do feel my vision going black, I grab something to steady myself as quick as I can and try to sit down if possible. If I am already on the floor or seated, I can’t fall from a great height. I try to keep my head lower as well to help gravity pull the blood to it quicker (like this). Since some of these can be serious though, please do see your doctor if you haven’t as I’m not a medical professional.

Hormone Regulation & Acne

Hormones are something I struggle with greatly. I never go into detail at all about these issues as it’s not related to fashion or my blog, but for the purposes of this post, my hormones are terrible. They can make me go 6 weeks without a period, then it’s 3 weeks, my face blows up with acne, I get hot flushes, I get hormonal migraines… the list is endless. I’ve been to my doctor numerous times and due to having an inherited blood clotting condition, I can’t take estrogen because it increases blood clotting risks. This means I can’t take any hormones to add to mine.

Progesterone only is available, however after the research I have done, taking progesterone is not safe for Hypermobile Ehlers Danlos Syndrome as it causes the joints to be more lax and loose. This is why women are usually suffering a lot more symptoms before their period due to the rise in natural progesterone.

Since I cannot have any of these hormones, I’m currently trying 100mg of vitamin B6 daily at the moment as per the suggestion of my doctor as it helps to regulate your own hormones. I will update this to let you know if it’s working. I also try to eat as clean as possible as I know sugar and processed foods can mess up your hormones a lot too. If anyone else has tips on hormone regulation, please let me know!

With regards to acne, as soon as I hit 14 and my symptoms started to show quite bad (due to hormonal changes in my body) I got acne. I’m now 29 and still have it. It flares up badlyΒ  due to my hormones, but it also flares up with certain foods. If I eat sticky sweets/candy, it comes out my face, the same as oily foods. I take a liver supplement called Bionutri Taracyn and that’s helped hugely as it contributes to encouraging my liver to detox properly. I’ve noticed a huge benefit with that.

  • So trying to eat as clean as possible
  • Trying to keep my hormones under control
  • Liver support has made a world of difference with my skin

Regarding face care, everyone has unique skin so it’s about finding what suits you, but one thing I can’t be without is my Derma Skin Roller. I use that as much as I can and it helps with the scarring and the breakouts. A great face care regime is a must though, to keep the bacteria away. I’ve used Liz Earle for the past 2 years and love that brand.

Ingrown Hairs & Blisters

Ingrown hairs are a complete pain! Because our skin is so stretchy, the hairs often get trapped growing into it instead of out of it. Some weeks can be so bad that I have infected follicles all over and around 30 ingrown hairs on one leg.

Tips: I know exfoliation can help free them up a lot, as can dry brushing, laser hair removal has also been shown to work, and what I do is tweeze a hair out if it’s trapped as I can prevent it from getting infected, however this is very painful. I think it hurts worse than most hair removal, especially on your calves. I’ve not found any of the lotions to be of much help, but keeping on top of it is key.

Regarding blisters, I know Ehlers Danlos Syndrome creates such sensitive feet! Because our skin is so soft and supple, it ends up moving a lot with the shoes. I have watched what my skin does and the top layer moves with the shoe, while the other layers underneath do not, which causes me blisters. They can happen within a really short time and even comfortable shoes can do it. If it’s hot, that’s even worse.

What I have found useful is: two pairs of socks – those stop the friction as they rub against each other instead of your skin, so if I’m in trainers, that can work. Putting plasters/band-aids on before I put the shoes on – this is something I have to do as I know I will get blisters, so I put plasters on the areas which have any friction before I even leave the house. This way I am preventing any from happening rather than dealing with the aftermath of torn up feet. It’s hard to find incredibly comfortable shoes which don’t cause pain, but once you do, stick with them! Buy multiple pairs for the future if you have to, or stick to comfy trainers.

Chemical Sensitivity

This one pretty much sucks. I’ve had a chemical sensitivity since I was about 13. By this I mean anything with a smell makes me sick. I can’t use or be around perfume, hairspray, aerosol deodorant, bleach, nail polish, paint etc, as it makes me really ill.

The best thing I can say for this is avoid it entirely:

  • Use a light roll on deodorant
  • Don’t wear perfume
  • Don’t use scented soaps and washes
  • Don’t use hairspray
  • Try essential oils for perfumes instead as I find myself tolerating those more as they’re natural
  • Look out for water based nail polish too, I recently discovered Little Ondines and their nail polish has zero smell and is amazing! Here is my blog post on them.
  • Be careful with soaps and washing powder too, some washing powders are too strong for me and wearing the clothes has made me ill, as has left over soap smell on my hands and roll on deodorants that have a stronger smell. Always be cautious.

Avoidance is key though, making sure my house mates or family know my sensitivity and ask them not to use sprays in the house and not to cover themselves in strong deodorant or perfume (Lynx is the worst for me) so that I don’t get sick when I am by them. If I am travelilng and can smell sprays, I try to move as far as possible, or cover my face with a scarf. A few times I have been on a train and someone decided to spray deodorant or paint their nails, so I’ve had to move to a new carriage as quickly as possible. It’s best to act as soon as you smell it, don’t wait and hope it goes away as you will most likely end up really sick and it’s too late. New years eve is a tough one as a lot of people are wearing gifted perfumes and going out at night, so they eat in restaurants before, which has also been known to make me ill as I couldn’t move tables.

Supplements

One of the best things I have done is take supplements to help support my body. I have been working with a naturopath that I found here in Bath called Lucy Peel and certain supplements have changed my life entirely. Every body is different though so it’s good to work with somebody who is trained in that department what your body is lacking and what will help. I already mentioned the digestive enzymes and pro-biotic, but I also take C-Max which is rich in vitamin c, magnesium, potassium etc and it’s amazing! The liver support is a dream as well. Bone broth comes recommended too since it has all the collagen supporting elements to it. There’s numerous things you can take, but it’s important to take a good quality supplement and only take what you need, so it’s a route to go down with a professional. I’m 100x better taking my supplements now than I was without them, my body is a mess without, so I know I’m on a good path. I would love to know what supplements and vitamins help with your symptoms too! I know I’m already taking B6 for the hormones, but a mixture of all the B’s is something I need to up as well.

Extra random tips:

  • Bruises – Arnica gel works well
  • Yoga/Pilates – Make sure the teacher tells you if you’re over extending
  • Party tricks – Don’t do them! No popping joints or stretching too far – It causes future issues.
  • Chronic fatigue – Learn about pacing and how to manage energy
  • Exercise – Work with a trainer who knows EDS so you don’t damage joints
  • Nerve pain – Some medications from the doctor can work at suppressing them, but avoid touching the area entirely until it’s not flared up anymore

So, I hope this post has been helpful to you! I’m hoping it becomes a comprehensive guide with everyone’s advice all put together so it can really help anyone out who’s struggling with Ehlers Danlos Syndrome symptoms and needs some hacks or quick fixes. You’re not alone. All of these things listed here are from my own personal experience and things I’ve learned over my life. Lorna xx.

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55 Comments

  1. Ali
    July 14, 2018 / 1:13 pm

    What an informative post Lorna. And very very helpful. I have some of these symptoms very mild. But the knee ache I do get the same as you. I am sure this will help a lot of people xx

    • Lorna
      Author
      July 15, 2018 / 8:57 pm

      I’m hoping it will! Anything I can say or do to make it easier for others is important. Thank you, Ali xx.

  2. July 14, 2018 / 11:10 pm

    You deal with so much Lorna! But it’s wonderful that you’re able to find things that work for you, and that you can share those tips with others to help them also! πŸ™‚

    Hope you are having a great weekend so far πŸ™‚

    Away From The Blue Blog

    • Lorna
      Author
      July 15, 2018 / 8:57 pm

      Thank you! I truly hope it can help others!

    • Lorna
      Author
      July 15, 2018 / 8:57 pm

      Yeah, it’s very gentle!

    • Lorna
      Author
      July 16, 2018 / 1:41 am

      I’m glad it’s really informative and helpful!

  3. nobasisinreality
    July 16, 2018 / 12:14 am

    I’m so sorry that you’ve had to go through all of these things – so nice that you can share your experiences to possibly help others!

    xx,
    Meredith
    LATEST POST | INSTAGRAM

    • Lorna
      Author
      July 16, 2018 / 1:42 am

      Thank you for your kind words! I am hoping it will help others xx.

  4. jane
    July 16, 2018 / 4:22 am

    This is so educational dear. I am sorry if you are going through rough patch now but i believe everything will be just fine.

    Much Love,
    Jane | The Bandwagon Chic

    • Lorna
      Author
      July 16, 2018 / 12:11 pm

      Thank you!

  5. Delia McGrath
    July 16, 2018 / 7:23 pm

    Thank you so much for all this info. I hope to add some info that can help others too. I have digestive problems very bad all my life. Now diagnosed as diverticulitis I must eat very small meals or feel so loaded that I think I will burst. Fasting every other day really helps but hard to do.
    A similar thing with a pocket in my throat often makes swallowing difficult and food gets stuck. This is worse with the first meal of the day and with dry types of foods like potatoes and bread and it’s like my throat won’t open up to let the food into my stomach. Eating cucumber with food helps it go down. Also very small mouthfuls.

    • Lorna
      Author
      July 16, 2018 / 7:50 pm

      Hi Delia! Sorry to hear you have that, my mum has diverticulitis too and her diet is very limited. She can’t have any seeds at all in case they stick in her pockets, no spice, nothing sticky etc. I feel for you. Hopefully you’re managing to keep the flare ups under control. Thank you for adding your information! xx.

    • ali
      July 16, 2018 / 7:55 pm

      Hi Delia,
      Im Lorna’s mum and also have this dreadful disease. I am on some face book pages which help greatly. You just never know how you will be from one day to the next which makes planning things impossible. I sympathise xx

    • princess
      August 9, 2018 / 9:14 am

      have you look into get tested with an GI Dr? my daughter has hEDS and she has problems with her throat with passing the food, now GI Dr. stretch out her throat around every six months because it becomes tight, I don’t remember the name of that problem, something about RING!!!! After the stretchiness she feels better and can swallow better the food and her meds.

      • Lorna
        Author
        August 9, 2018 / 12:18 pm

        Thanks for sharing your thoughts with Delia!

  6. Wendy
    July 16, 2018 / 7:38 pm

    Thanks for your tips. I am highly sensitive to the smell of nail polish, so I switched to Jamberry nail wraps

    • Lorna
      Author
      July 16, 2018 / 7:49 pm

      Oh I will have to look into those! I definitely recommend Little Ondines too as it’s just like normal polish, but no smell!

  7. Trudy williams
    July 16, 2018 / 7:56 pm

    Avoidance is definitely key! All types of avoidance unfortunately, but it is normally the only safe route. Clean eating is a must, no processed foods for us!πŸ˜• Defo with you on the hot water bottles! We can’t live with out ours! Though in this ridiculous weather we’re having it’s not an option for a hot water bottle, because of the heat intolerance πŸ™„ We’ve also found tubi grip bandages over the knees, ankles, wrists and sometimes elbows also helps with the pain. Also magnesium gel from holland and barrett really helps with the msc pain! But be careful only to use the tiniest amount or the hives break out n party!

    My kids have regular food grade Epsom salt baths as this is the only way they can absorb magnesium. They cannot absorb it through their gut, but they can through their skin. So a warm epsom salt bath a couple of times a week really helps reduce their pain, sadly it’s not possible for me to get in a bath now, but I soak my feet in epsom salt instead, so that I can replenish my magnesium at least a little, I also use and rely on a tens machine.

    After a very long time of looking we have found we can tolerate original source shower gel! It’s vegan also! But only the ones without tea tree in! Those make most of my family react, so we stick to the coconut milk and lime one. My Gp put me on vit d 3 fultium capsules and strongs vit b complex a few years ago, and I have found that this makes a big difference! When I try n go without for a while I definitely notice a difference. Wet clothes and a fan is a must for me! It really helps!

    We don’t buy electrolyte drinks as they can be bad for you and full of chemicals most of the time. My hubby has done a load of research, and now makes our own electrolyte drink full of natural stuff, I tell you what, it makes an almost immediate and vast difference, especially when the POTS is at its worst 😁 I have to constantly make sure the kids are drinking, we only drink filter too!! If my son doesn’t drink like a fish his POTS kicks in, and I can tell straight away he hasn’t had enough fluids even though he drinks much more than your ordinary person needs to.

    He suffers terrible with feet blisters and skin peeling too, it comes off like wet wallpaper. When I was young I did too, not so much anymore. One of the best things for my kids was a podiatrist. They now only wear a particular brand and particular type of shoe with insoles. The orthotics and the shoes have made a huge difference to their pain. 😁

    Warm lemon water once a day in the morning helps my bladder problems…. It keeps my infections to a minimum, so most of the time I don’t have to take a maintenance dose of antibiotics anymore…. Believe it or not it makes the body more alkaline and less acidic, and reduces the chances of getting an infection and also can help clear one if caught in time…..who’d have thought! It really does work though. Unfortunately, my problems have also been since I was a child so the damage has already been done and for the last 5 years have been an ISC patient. Hey ho!… To most people living a life of avoidance seems horrific, but not living that life is horrific for people like us….

    • Lorna
      Author
      July 16, 2018 / 11:20 pm

      Hi Trudy!

      Thank you for taking the time to comment. I saw my post has been shared on Facebook somewhere as loads of clicks have come to the post. Do you know which group it was posted in? I checked the ones I am a member of, but if there’s others, I would love to know!

      I need to check back and see if I wrote Vitamin D (memory is so bad!) as I’ve been taking it myself for 2 years. I don’t absorb very well in the digestive system, so I take the spray, and I notice a huge difference, especially with my immunity.

      I’ve tried lemon in water before, always gives me cystitis personally as it’s too acidic for my bladder, but as we know, we are all unique and individual, so thank you for sharing that as it could help some other people with similar problems to yours.

      What you said last about the people freaking out if they avoid things as they’re missing out is so true, but to us, I freak out if I’m exposed, so it’s completely different to them. It’s a great way of putting it!

      My feet used to peel as well when I was younger, and as soon as my hands are in water (after a minute) they wrinkle and get painful, that happens even if I’ve sweated too much. Just on Saturday my hands were sweating and looking soggy and painful.

      Staying hydrated is an absolute must, I agree with you there. How do you make your own electrolyte drinks? I’ve just got a pure powder which is the 4 electrolytes only, it tastes terrible (like salt) but it’s pure thankfully. I tried the dissolving tablets, but they made me feel so ill with all the added nonsense in them!

      Again, thank you so much for your comment. I’m glad you felt you could join it, and I hope you and your children are doing ok xx.

      • Trudy Williams
        July 17, 2018 / 11:36 am

        It was Ehlers Danlos support UK fb page that I saw the post. My hubby found it on the internet, I’ll try n post a link for you! 😁
        I’ve only a screen shot of the recipe now and can’t find where he had it from so can’t post the link atm…. I don’t want to write the recipe in here as it’s not mine. I’ll try n sort it and get back to you! 😁

        • Lorna
          Author
          July 17, 2018 / 11:39 am

          Thank you! I found it πŸ˜€ I’m so pleased everyone there liked it! πŸ™‚

  8. July 17, 2018 / 7:39 am

    I am so glad you fot diagnised and can now find ways to help relieve a lot of your symptoms. It is frustrating trying to figure out the root of your problem. Thank you for sharing this

    xo
    http://www.laurajaneatelier.com

    • Lorna
      Author
      July 17, 2018 / 10:32 am

      Thank you, me too!

  9. July 17, 2018 / 3:58 pm

    This is such a helpful, comprehensive post, lady- well done! You are so brave + strong! Sending you good vibes. πŸ™‚

    -Ashley
    Le Stylo Rouge

    • Lorna
      Author
      July 17, 2018 / 4:01 pm

      Thank you so much πŸ™‚

  10. July 17, 2018 / 10:32 pm

    This is such an insightful post dear. I am sorry to hear that you have this syndrome but good to hear that you know what to do to help regulate things. God bless and stay positive darling. <3/Madison
    FASHION TALES

    • Lorna
      Author
      July 17, 2018 / 10:45 pm

      Thank you for your comment!

  11. July 18, 2018 / 3:41 pm

    You are managing so much! It’s great that you are sharing so much of the information that you have learned through your experiences to help others who may be going through similar experiences.

    I have pretty bad headaches/migraines and sensitivity to light as well. I suffered from a TBI a few years ago (that almost killed me and the Lookbook! So glad my baby survived, haha.) And all of your suggestions are so spot on. I also find that specific color filtering lenses really help. Certain lighting (like fluorescent or sunlight, unfortunately) can worsen the headaches, and there are companies that make glasses that help with that. I bought theraspecs, but I’m sure there are other companies out there.

    Great post!
    AMY | LITTLE LUXE LOOKBOOK

    • Lorna
      Author
      July 18, 2018 / 4:35 pm

      Gosh, that sounds terrible! I hope you’re ok! Thank you for sharing about the glasses, I will look them up!

      • July 18, 2018 / 5:38 pm

        Yes, thankfully! But making every day adjustments and accommodations is necessary, so I completely understand where you are coming from. I think it’s wonderful that you are so open about your experience and sharing everything that you’ve learned so far. I’ve shared little tidbits, but the trauma sometimes makes it hard. Still, I’ve been thinking about starting a separate site to share insights just like what you’re doing to help people who are struggling to find resources and things that work, and I think you’ve just inspired me to push forward with this.

        • Lorna
          Author
          July 21, 2018 / 11:53 pm

          Oh I’m really glad I could inspire you! Let me know when you start it! Thank you so much!

  12. July 18, 2018 / 4:04 pm

    This is a very helpful post and, having hEDS myself, I do many of the things you mention. One note, though: the word is ‘sublUx’ which is short for ‘subluxation’.

    • Lorna
      Author
      July 18, 2018 / 4:28 pm

      Thank you! I confused it with ‘lax joints’ so assumed it was the same.

  13. Eniwhere Fashion
    July 18, 2018 / 9:16 pm

    Omg!!! I’m so sorry. It doesn’t have to be easy to deal with this kind of problem. You are very good at reacting in this way and I think your post may be useful to many people who suffer from this syndrome.
    Now I RT on muy Twitter.
    Have a nice day and don’t miss my latest post, now on my blog! Kisses from Italy and thank you for your visit,
    Eni

    Eniwhere Fashion
    #Kidswear: Alessandro and Levi’s

    • Lorna
      Author
      July 19, 2018 / 12:26 am

      Thank you so much! I appreciate your support!

  14. July 19, 2018 / 12:56 am

    These are really great tips. I like that you showed how don’t get stressed. A lot of times stress can cause a lot of health issues and it is something most of us should try to avoid when possible. Thanks for sharing this lovely πŸ™‚ I have joint pain myself I deal with and I am sensitive to gluten as well with my IBD. i hope your having a fab week x http://www.bauchlefashion.com/2018/07/spotlight-on-coachs-new-look.html

    • Lorna
      Author
      July 21, 2018 / 11:54 pm

      I can’t say that I never get stressed, there are numerous times when I do, but I try my best πŸ™‚

  15. July 19, 2018 / 12:44 pm

    You’re going through so much Lorna! My heart goes out to you. I have some of these symptoms especially knee ache and that only makes my life very difficult and keep on breaking down at times cos’ of these health issues! I can’t even imagine how do you manage with all these health concerns! More power to you, love! Thank you for writing this detailed post, I hope it will help those who are in need!
    Hope you’re having an amazing week!
    Ankita | Real Girl Talks
    http://realgirltalks.com/
    Instagram

    • Lorna
      Author
      July 21, 2018 / 11:54 pm

      Thank you so much! Sorry you get knee ache too, I hope you’re able to cope with it! Thank you so much for the comment!

  16. July 19, 2018 / 4:54 pm

    Wow, this is a handful. So sorry to hear you go through all these dear. Wishing you the best. Anyway, thanks for sharing this information online. Many people will definitely learn a lot from this.

    Jessica | notjessfashion.com

    • Lorna
      Author
      July 21, 2018 / 11:54 pm

      Thank you, Jess!

  17. July 19, 2018 / 5:33 pm

    I’m glad to see how you are dealing with it! know this super informative post will help a lot of people. <3

    • Lorna
      Author
      July 21, 2018 / 11:55 pm

      Thank you!

  18. July 24, 2018 / 7:54 am

    Hi Lorna
    I read your article very nice and great advice Always great stuff. I always resonate and am inspired by what you share.☺☻

    • Lorna
      Author
      July 24, 2018 / 12:02 pm

      Thank you so much!

  19. July 27, 2018 / 12:26 am

    This was, as with all of your health posts, a very informative and enlightening read. It really puts into perspective all that you have to deal with, adjust and think about every day – so many things that most of us, luckily, don’t ever have to think about in our own lives. That is the thing though that it’s important for everyone to understand – that every medical condition (however rare) is someone else’s real life. This isn’t strictly related but between 2012 and 2014 I was in a relationship with a girl who is a wheelchair user (we’re still friends) and it really opened my eyes to things I’d never thought about before… how the easiest of ordinary activities can be so difficult to do and how unaware and unprepared much of the world is for those who have additional needs and need extra time to prepare for things.

    Your tips for how to sleep at night in this awful heat are interesting. I’m really struggling with that at the moment. I’ve got a big fan that I’ve situated at the foot of my bed and, though the cool air is welcome, the noise drives me nuts after a while as I like to sleep in a silent environment. So then I have to decide which I dislike most… heat or noise! :/ It depends… on different nights I might have different answers to that. I quite like your ice bottles idea… I might even give that one a try myself.

    As a fellow migraine sufferer (though, thankfully, not so often) I totally get what you are saying about how different painkillers work for different people. I’m amazed by the range of difference in the ones that I’ve tried. The best one for me, by far, is Hedex Extra. That gives me some relief every time whereas a lot of other brands don’t seem to touch the pain at all. I always make sure I have some Hedex in the house just in case. πŸ™‚ Of course… in the present weather conditions I’ve had considerable lack of sleep and I’m amazed to have avoided a full scale migraine so far in this heatwave… I hope my lucks holds.

    I always really feel for you when you write of the things that you can’t eat due to your conditions. It’s so sad that you have to miss out on so many flavours and interesting dishes. It must be quite hard for you to make your meals interesting – but I’m sure that with so much experience of having to avoid so many things you’ve probably found ways to make the best of what you can have. I wonder has anyone ever written a recipe book aimed at people with such food intolerances or is that just too niche?

    • Lorna
      Author
      July 29, 2018 / 7:00 pm

      Thank you for such a long comment, Steven! I took a while to reply as I wanted to make sure I had the time to.

      Thank you for the Hedex recommendation, I will look out that one. The ones I have from the doctor are terrible, they make me feel so sick, like I might vomit, so I don’t like them much.

      The ice bottle really does work though at night, definitely! I like to sleep with it, so it keeps me cool, but don’t keep it on your skin too long as it causes ice burn, ha ha. It works well to have it next to you.

      I am sure there’s probably a gluten free recipe book, but I doubt cornflour free as it doesn’t seem to be an allergy for people that’s known. It seems to be rarer. I would imagine a paleo cook book is somewhat similar though since it has no grains, and often no dairy, but there’s not much flavour with that as it’s all veg and meat. I have managed to branch out a lot more with food though, so I’m happy at the moment, don’t feel bad!

      • July 31, 2018 / 8:08 am

        Oh yes, I don’t want ice burn. That’d be interesting to go to the doctor in the middle of summer with a touch of frostbite. πŸ˜‰ I’m glad things have cooled down for the moment anyway… I’ve had much better sleep the last few nights.

        • Lorna
          Author
          July 31, 2018 / 10:41 am

          That would be quite hilarious πŸ˜€

  20. Delia
    August 1, 2018 / 12:57 pm

    Hi Lorna and Ali, thanx for your kind words.
    Here’s a little poem for those of us with this unavoidable chemical sensitivity.

    Ode to the laundry
    *********************
    It seems you must be poisoned
    Just to wash your clothes
    But now that the formaldehyde
    Is getting up my nose
    The method that they kill you by
    Embalms you to your toes
    They’ll find me six months later
    Still smelling like a rose

    • Lorna
      Author
      August 1, 2018 / 3:51 pm

      Gosh, that’s a really deep poem! Thank you for sharing xx.

      • Delia
        August 1, 2018 / 10:20 pm

        Seriously though, so important to keep these chemicals out of our bodies.

        • Lorna
          Author
          August 1, 2018 / 11:43 pm

          Absolutely, 100%!

Thanks for your comments =) I read & reply every one =)