HEDS: Hello all warriors 🦓🦓🦓, I’m... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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HEDS

Mac71
Mac71

Hello all warriors 🦓🦓🦓,

I’m michelle, hoping to make some friends on here who understand.....

I’m 48, single (too knackered or in pain to think about dating) and have one beautiful 21 year old daughter.

I was double jointed as a child always sat in weird positions on the floor (weird to others, comfortable to me). Became a gymnast and entered a few competitions. Never had any pain but was always tired. Also always felt nausea and terrible car/motion sickness.

Developed TMJ as a child and was always getting jaw lock. Once it locked and I could only open it about 2cms. This went on for months went to Dentist hospital and eventually it resolved but it still is out of joint now and clicks every time I eat. Fell over as a teenager and ended up in hospital for a week (not quite sure what happened to my knee but dr told me I had housemaids knee which was strange as I was only about 17).

Got pregnant at 28 had terrible morning sickness that lasted all day every day for the full 9 months.

Gave birth to my daughter and developed post natal depression (never suffered with depression before).

Anyway fast forward to me turning 40, I became very exhausted, the least thing would result in me having to lie down for at least an hour to recover I also developed POTS. I was in pain daily and was diagnosed with fibromyalgia in 2015.

In 2016 I needed a surgery to have my gallbladder removed the day after the surgery the surgeon told me I had adhesions everything inside was stuck together and he told me my connective tissue especially my collagen was very fragile and I had a bleed during the operation due to weak blood vessels and after surgery I had a Hematoma. He called me a zebra which I didn’t understand at the time. He advised against any future medical procedures due to my fragile tissue.

The last 5 years have been very hard. Exhausted every day, gave up work. Pain day in day out. Every joint pops and clicks, muscles spasm and twitch. I have loads of allergies and food intolerances. Definitely have histamine problems.

Now it is all coming together. I’m waiting to see a rheumatologist to discuss hyper mobile EDS. It runs in my family.

My questions are......

What do fellow EDS warriors find helps with pain. I’d rather not go down the medication route because I’m sensitive to so may drugs with lots of allergic reactions. I find I have to keep moving no matter how much it hurts as lying in bed or doing nothing I cease up and the pain is even worse. Heat helps (hot water bottles, saunas, the sun).

What do people do to help sleep? This is a big one for me. I have insomnia and I can never find a comfortable position to sleep. My shoulders are really painful and click every-time I move them so lying on my side hurts. I have bone spurs in my neck and stenosis so it’s hard to find a comfortable position for my neck. I manage to sleep for an hour or two but then need to move position as I’ve ceased up. I also have sleep apnea which wakes me up a lot. Sleep (or lack of it is a big thing at the minute).

IBS/digestion problems is a huge problem I won’t go into the ins and outs but let’s just say I’m forever on the loo. Bladder is very sensitive too and can’t seem to hold much urine before I need to dash to the loo. Life is pretty miserable but I’ve accepted now this is my new normal and I just have to find ways to cope the best I can with everything and try to stay as positive as I can.

Love to hear your stories and find what works for you. Please get in touch, be nice to know I’m not alone 🤗

9 Replies
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Hi Michelle, so sorry you are suffering. I identify with some of your points. I have some small growths in my gall bladder, I wonder if this is related. I too am hypermobile, they said not bad enough for EDS. I had surgery and had issues as things were stuck. It’s very hard. I also have bowel issues. I am now seeing a POTS/hypermobile physio. It’s hard, as when you have joint issues there is so much you can’t do. However, I’ve realised that sitting about has only made me a lot worse. I’m starting with just 30 seconds every other day of cardio!! I’ve found salt and water helps me. I’m going to get some stockings.

I have a histamine issue too, giving up bananas and avocados has helped me loads. I also react to beef as it’s all aged. I gave up gluten and that really helped. I’m trying to cut out most dairy.

I’m looking at supplements too. A top American EDS guy recommend a range of supplements.

I really feel for you, it’s so hard. But please keep going.

How did you get diagnosed with POtS? Ive not seem a cardiologist yet. Not sure the tilt table test has much use. Big hugs

Mac71
Mac71 in reply to JaneyJaney

Thanks so much for your reply 🤗

It’s so useful to make friends with people who understand what your going through and we can share what helps what doesn’t help and encourage each other on our bad days and feel joyful on each other on our good days.

I’ve just managed to vacuum the whole downstairs of my house, something so easy and simple to most yet to me I feel shattered now like I’ve done an hours workout and need to lay down to recover.

Funny you should mention bananas, I eat one every day (sometimes two) wonder if that’s contributing to the hives. I’ll try stopping them for a week and see how it goes, so thanks for the tip. My hives are like long red raised scratch marks. Very itchy and hot. Usually get them on the trunk of my body and neck area.

I have also been dizzy light headed when I stand from sitting. Especially if it’s hot, ie been sitting outside in the sun, lying down in the bath. Can happen at other times. Gp put a pulse monitor on my finger checked my pulse when sitting down. Then told me to stand up and checked it again and it had shot right up.

My daughter suffers with it too. I’ve never passed out but feel like I’m going to and have to grab hold of the walk to keep me upright.

I’m not sure if the gallbladder is related to the EDS or not. The surgeon definitely noticed my connective tissue was abnormal though. He never actually said I had EDS but told me to make an appointment with Rhumatology and called me a zebra. He also said I was a bleeder and asked if I was on aspirin. The worrying thing is I feel like it is getting worse year on year. I try to keep a lid on my anxiety but it’s hard. Healthy people don’t really understand why I’m always tired or in pain so sometimes I just don’t mention it and pretend everything is ok because I’m sick of being known as the “sick” friend.

I’m really trying to see some positive in this but it’s hard. For years I was seen as a hypochondriac at my gp surgery and was sent to a specialist in medically unexplained symptoms but was just offered antidepressants which I always seem to react badly to.

If you do know of any Suppliments please let me know as I prefer the natural/herbal route.

I take a multi vitamin daily, vit d, omega 3 and digestive enzymes with food as I don’t think my guts are absorbing the vitamins out of my food. My vitamin ranges are always at the lower end of normal and my calcium was below the normal range.

Can I ask how old you are and how long you have had symptoms? Xx

JaneyJaney
JaneyJaney in reply to Mac71

Hi, will send you a private message

About the bladder thing, I was going all the time, but then I was in a situation where I couldn't. On my way in to a one hour lecture I was worried that I hadn't gone to the toilet before hand. I wasn't sure I was going to survive. Then when we left Son felt ill and wanted to go home straight away, which was a 1.5 hour drive. Got home, settled him in, sorted out some food, and then suddenly realised I hadn't gone to the toilet yet!

I read recently that you have about two hours after that feeling that you really need to go to the toilet before you really need to go to the toilet. So I now ignore that feeling that I really need to go to the toilet. Haven't had an accident yet!

Mac71
Mac71 in reply to cyberbarn

Hi, thanks for the tip I’ll try ignoring the feeling and try to re train my bladder.

Saw rheumatologist yesterday and had a really good consultation. Finally felt listened to. He used toolkit when he did examination and said I definitely have EDS type 3 (hyper mobile) but just to be on the safe side he is sending me for genetic testing to rule out the other versions of EDS.

Also having a heart scan. He’s ordered a bunch of blood tests and referring me to the pain clinic.

Also mentioned getting physio for me and possibly seeing an immunologist about my histamine issue.

Came away thinking someone is finally taking me seriously

Hi. Sorry to hear you're feeling rubbish. I've been diagnosed with HSD and can relate to a lot of that.

In terms of pain I did take codeine and then tramadol for about a year when my pain (especially in legs) had got to the point that I could hardly walk but the side effects are not nice at all and I was never sure how much they helped really as I was still in too much pain to be able to do more so I came off them a few years ago and only take paracetamol now for the majority of the time along with occasional topical ibuprofen (can't tolerate it orally). Do very occasionally use tramadol for acute pain when I can't get (or remain) out of bed and used diazepam for back spasms on 1 or 2 occasions. I had physio for a while but to be honest I'm not sure how much that helped as most of them didn't even recognise HSD/hEDS as a condition (and I didn't get the diagnosis for a while). I think some of the exercises helped but generally they would expect more of me than was sensible so in the end I had to kind of strip it right back and just do what I was able to, and started back on stationary bike which I think did help over the period of many months, and then built in short spells on the rowing machine (until lockdown closed the gym!) and few exercises with 1kg weights to try and help upper joints. Some doctors/physio will say if you are hypermobile you just need to exercise loads and loads which is clearly not true if you are symptomatic and prone to injury but I think it is true that exercise can help if done in the right way for you. I still have chronic pain and difficulties and it probably effects more joints than it used to but I would say my base level of pain is lower now than before and I am definitely able to walk further and generally with more ease.

Heat also helps me with pain and I find a hot water bottle between knees helps at night, although I agree that there is no entirely comfortable position. Only position left for me really is on right side which does hurt my neck and shoulder but usually it's manageable enough for me to fall asleep at some point. Some people use a lot of extra pillows or one of those large pregnancy pillows to try and support all various painful joints!

In terms of supplements I take zinc and vitamin d. Had started ginko biloba a week or so ago but as my ibs has been particularly bad I stopped that for now in case that was contributing. I've tried high strength glucosamine and one that was I think called chondroitin in past but increased headaches made me stop those in case, and I've not tried them again yet. Some people swear by magnesium but I've not tried that or been tested for deficiency so far. I take an anti histamine most of the year (cetirizine) to try and help allergies.

In terms of fatigue you could ask to be tested for vitamin d, iron and b12 if you haven't already to rule out those contributing , and poss magnesium although I seem to remember reading that magnesium deficiency might not show on the standard blood test they tend to do - someone else might remember more about that. My fatigue has been pretty debilitating the last year or so especially and can relate to having to lie down after a walk or activity. Like I said I can do more than a few years ago in terms of mobility but then the fatigue wipes me out! Although fatigue it seems can hit whenever even if I've been mostly resting. I've put it down to the hsd but I've been wondering recently if it could be the ibs too contributing to the fatigue. Apparently it is a symptom too of ibs but I think I had forgotten that or failed to take notice as thought I couldn't do much about ibs anyway. But I have been reading about the low fodmap diet recently that seems quite successful in helping significantly with ibs (including fatigue) so am thinking I may try that. It is very restrictive in that you cut out all foods that are designated high fodmap for 8 weeks or so and then try and introduce them one at a time to see which you can tolerate (that's presumably if your symptoms have reduced enough that you would be able to tell). It may well be that you have intolerance to things that are low fodmap too of course - soy sauce is apparently low fodmap but I can't tolerate that for example but like I say this does seem to have a good success rate and I even saw a study (it was quite a small one admittedly) that showed low fodmap was particularly helpful for those who have both hypermobility and ibs. Which is nice to hear as often it seems that things that work for others, don't work for us for whatever reason! Might be worth checking out anyway.

My bladder has also been troublesome the last year or so and not sure if that is due to the ibs (putting pressure) or something separate. I had thought it was down to the fairly large fibroids on outside of uterus they discovered recently putting pressure on bladder but not sure now. I get pain sometimes (so bad on one occasion they sent me to hospital)around where my appendix is but they ruled out appendicitis so not really sure What is going on in that whole area!

Sorry that post was very long!

Hope you can get a diagnosis sorted. Should help that you have family history. Do you know if the rheumatologist you are seeing is knowledgeable on EDS?

Mac71
Mac71 in reply to jpain

Thanks so much for your message and tips. My consultant seemed very knowledgeable on EDS but I don’t believe that he specialises in it. He spent a good half hour checking all my joints and skin. Finally asked me to touch my toes and of course I went one better and put my hands flat on the floor.

Funny you should mention the pain in your legs. That’s my worst pain too I would say. The back of both calves. I’m not sure if the pain is coming from the veins (circulation problem) or the muscle/tissue. In the shower on a morning my legs feel very weak and aching like a heavy feeling. I get a throbbing sensation and tingling in my feet. I suspect is it to do with blood flow.

I’m so sensitive to medication so try to stick with paracetamol, heat or stretching. Used to go to yoga and Pilates a lot as I was so flexible but not sure if I used to overdo it as for a couple of days I could hardly move afterwards, so now I’m sticking with gentler exercise like walking and swimming.

Yes I think it was easier to get a diagnosis when they know it runs in the family but to be honest I’ve got dodgy genes in my family anyway as my grandmother had auto immune conditions and my grandfather had EDS. We weren’t sure exactly what type my grandad had so that’s why I’m being sent for the genetic testing but he said I’m definitely hyper mobile. My poor grandad committed suicide bless him, probably wasn’t the understanding of the illness so much back then and he had to give up work due to his condition which resulted in him feeling depressed.

At the moment I’m just taking each day as it comes, if it’s a good day I do a bit more. If it’s a bad day I try to rest up more but at least do a little something to keep the joints moving. The rheumatologist said try not to stay in bed as it will only make things worse and I agree. Ibs is a big thing and yes I’m looking into eating cleaner and also looking into the low histamine diet. The only Suppliments I’m taking at the moment are vitamin C and vitamin D but I think he’s going to check all my vitamin levels too so might not take anything just so he gets a proper accurate reading.

Please keep in touch and let me know how your doing and I’ll update this thread as I get more information and once I get results back from the generic testing.

jpain
jpain in reply to Mac71

Glad to hear you had what sounds like a fairly thorough consultation and are getting the genetic testing to rule out the other types of EDS, and also getting some blood tests.

Sorry to hear about your Grandad, that's really sad.

You might be on to something about blood flow. I think EDS can affect circulation which was one of the reasons I wanted to try ginko as it is supposed to help with this as well as fatigue. My calves don't tend to be painful (it is more knees, shins and ankles for me, occasionally thigh muscles) but I have noticed the last 5 or 6 months on my inner thighs and extending on to the back of one of my calves a sort of dark quite prominent spider web pattern that I presume is blood vessels that I have been meaning to ask GP about (always hesitate to bring new things up as with lack of understanding I think they have me down as a hypocondriac!). I also get pins and needles and cramp more than average so poss circulation based.

With regards to Pilates if you did want to give a gentle kind a go there is a woman called Jeannie di bon who does Pilates specifically for people with symptomatic hypermobility so gentler and to try and improve the sense of where your joints are. She's got some books and there is an online course which I keep meaning to give a try myself.

Out of interest when you go swimming do you limit how much you extend your joints or do you just let them go to their full range if you know what I mean? I used to enjoy swimming but haven't gone back to it as I couldn't seem to avoid hyperextending elbows and knees, and still get across the pool in less than about an hour! I'm never sure whether it is best to avoid hyper extending or whether it is fine to do it sometimes as long as you try and strengthen your muscles to handle it. Seems to be differing opinion even amongst EDS experts!

Best of luck with things and let me know how you get on. And Yes, good plan to take each day as it comes. I do get frustrated that my life is now limited (although I know of course some people are much worse off) and obviously you don't know what is ahead but can only try and improve things where possible and sometimes some elements can improve in time.

Thanks for the tip on the Pilates I’ll give that a go. I used to do Pilates class three times a week at my local gym but obviously because I’m more flexible I was putting a lot more pressure on my already fragile joints.

When I swim I always do breast stroke and yes I always hyper extend my arms and legs. Not sure if I’m supposed to on now but to me I feel more comfortable in the extended position than any others. You want to see the position I find most comfortable in bed. Legs stretched out long and straight and arms hyper extended out by my sides. I don’t know why I’m more comfortable like that but it’s the position my body likes to be in.

I’ve also found out my body does not like sugar. Had a small piece of carrot cake (my weakness) within 2mins of eating it palms of my hands go red and warm and I start feeling itchy. It seems I’m finding allergies to all sorts of foods/medications/toiletries/cleaners etc. I think I am going to go down the route of immunology to find out why my histamine is becoming a big problem and ask about MCAS. I’ve started taking naturdao (bought from Amazon) they are quite expensive but supposed to help people who have trouble breaking down dao. I used to be able to take a daily antihistamine but now I can’t even take them.

Thanks again for the tip on the Pilates I’ll def look that one up and give it a go because I find that if I’m too sedentary I feel even worse.

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