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
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.
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!
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 Citrate – I 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 badly 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.
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.
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.