I'm new here!

[Lin53]

Hello everyone, I'm new on here. I am 63 years old and was diagnosed with Joint Hypermobility Syndrome at age 60. This was actually a great relief that I had something I could put a name to, having suffered from various seemingly unconnected symptoms for many years. As well as the aches and pains I also have chronic fatigue, which kicks in when I have overdone things and forces me to rest for a couple of days at least. I also have digestive problems, sleep problems and arrhythmia and sometimes it really gets me down. People can't understand how one day I can be very active and the next I'm walking with a stick or can barely move because I'm so tired. At least my husband understands and is very supportive, so I'm lucky to have him.

[Boombiddy]

Hiya Lyn,

I am really glad that you have finally got the diagnosis that will make it all make sense and hopefully get the care you need.

I was in my 50’s when finally diagnoses and it was such a relief.

Do you know about the HMSA (Hypermobility Syndromes Association, -address is hypermobility.org)?

And EDS UK? (Ehlers Danlos UK).

They are great resources for dealing with the many and varied aspects of your condition.

There are some great articles on there from some of the leading doctors for these condition, and advice for everyday activities, and forums too, where there are a lot of people with experience and expertise.

I would also highly highly recommend Brad Tinkle's "Joint Hypermobility Handbook", written to help you cope well and get the best out of your doctors.This is what I got when I was coming to terms with having the syndrome and learning about it. It is so supportive and helpful for daily living, and for communicating with doctors. It has made my life a lot easier.

I am not the only one, but I have done some replies to posts here which give a lot of info about getting the best medical care for eg. your EDS gut problems, POTS, etc. This is because I have been through the system and been fortunate to get very good advice which I have tried to pass on.

When you feel like it, you could look to see if there is anything that chimes with you.

I reply to posts but haven't posted on this section as I am mainly in the Atrial Fibrillation Association here because well it is the latest in my collection of weird disorders!

Wishing you all the best,

Boombiddy.

[Lin53 in reply to Boombiddy]

Hi Boombiddy,

As soon as I was diagnosed I rushed homed and googled 'Joint Hypermobility Syndrome' - what a revelation! My rheumatologist just gave me a booklet about arthritis and not much more, I'm afraid, but the articles I found online were very helpful. For example, I had recently had an operation for a hernia. No-one seemed to know why I had got it because when it 'arrived' I was sitting on the bed with a cup of tea and a biscuit watching a film with my husband who had just had a heart op!

I found the information from EDS UK and HMSA very useful. I am currently being seen by a cardiologist for the Atrial Fibrillation (my last episode was yesterday actually, having lasted 36 hours). So far no cause has been found. I mentioned my JHS and actually had a leaflet with me which I passed on to him as he didn't seem to be aware of the link between the two conditions. I haven't previously mentioned on here that I was diagnosed with an aggressive form of breast cancer in May 2008, which involved gruesome chemotherapy and he thought maybe that had also affected my heart. Anyway, I'm still here!

[Boombiddy in reply to Lin53]

Ah atrial fibrillation, you too?

I don't know if you know yet, but there are two types of cardiologist.

Cardiologists are the 'plumbers' who deal with the valves & so on. If your echocardiogram looks fine (no valve troubles etc.), they have nothing to contribute.

Electrophysiologists (aka EP's) are the 'electricians' who deal with the electrical conduction system of the heart.

These are cardios who have specialised in heart arrhythmias such as AF.

So for AF, you need an Electrophysiologist.

Since with EDS/HMS, POTS is common, it is possible that your chronic fatigue and sleep problems could indicate POTS, especially if you are one of the people who get dizzy, light-headed and so on.

So it might be useful for you to speak to Jenni at STARS (Syncope Trust) who deal with dysautonomias including POTS, and she could put you on the right track, and put you in the right direction re an EP (Electrophysiologist) who knows not only about AF but also about your condition. Or, ring the Atrial Fibrillation Association who share an office with STARS anyway.

Have you joined the Atrial Fibrillation Association group here on healthunlocked? It is buzzing with really helpful and supportive people who can answer any questions you have, is really really good.

All the best,

Boombiddy.

[Lin53 in reply to Boombiddy]

Hi again,

Yes, the cardiologist I saw said he specialised in heart rhythms. I had an appointment at the end of May and was referred for an echocardiogram and exercise test and will be getting a follow up appointment in the next few months. I don't get that many episodes of AF, only about 2 or 3 a year but it always seems to start in the early hours and coincidentally whilst I am lying on my left side.

I do get light-headed sometimes and have suffered from slight dizziness for many years after having Meniere's syndrome 36 years ago (is there no end to my complaints?). I also have a slight hearing problem in my left ear which has been investigated and 'There is nothing wrong with me' (how often have I heard that? I get pain in that ear too but there never seems to be an ear infection, and I am wondering if that is connected to the JHS?

Yes, I have joined the AF group. it's really good to find other people who have a genuine list of ailments that they deal with on a day-to-day basis, as I'm sure people think of me as a 'moaner' who always has something wrong with her! I will also look into the POTS a bit more.

Thanks

[Boombiddy in reply to Lin53]

Hiya, know just what you mean re being with others who know what it's like to deal with a multi-system disorder. I do feel like the princess with the pea!

Suggestion re ear pain: sometime your EDS jaw probs can cause pain. It could be you're grinding your teeth/clenching your jaw in your sleep. My dentist noticed this (wear & tear on teeth), and fitted me for a night mouth guard. It helps.

Re hearing, I too have been told my hearing is fine but can have probs hearing. I think hearing can fluctuate with tissue laxity.Those 3 little bones in the inner ear, if the connective tissue around them is lax, may not vibrate with the same intensity/sharpness? Aargh have forgotten my O level biology! But I think you get the gist...

And maybe any inflammation in the jaw area from microdamage?

Really sorry I may be saying things you already know. But just in case...

[Jay66]

Hello and welcome,

it is a great relief, isn't it? I also have a husband who is very understanding and supportive, and it does make a huge difference too. If you are having sleep problems, a good pain-killer regime should help with that. Have you been given some?

[Lin53 in reply to Jay66]

Hi Jay,

I have a problem with pain killers, I can't take NSAIDs because I have had an ulcer years ago and they give me really bad indigestion. If I really, really need pain relief beyond paracetamol I will have 1 Ibuprofen and that's as much as I can tolerate. But my sleep problems aren't always because of pain, sometimes I go to sleep for 10 or 15 minutes and then I'm wide awake and can be awake all night (perhaps it's something to do with age!). I find that listening to audiobooks help though.

[Jay66 in reply to Lin53]

I also can't take NSAIDs any more after naproxen ruined my stomach. I had insomnia for many years (from EDS) but on the very first day I started taking tramadol, it was instantly cured. I find just one tramadol in the morning helps deal with pain first thing, and weirdly it also normalises my sleep patterns, which is odd and makes no sense because it is completely cleared from your system 9 hours after taking it. I assume it is from a secondary effect. Some people find tramadol makes them nauseous or dizzy, especially initially.

[Boombiddy in reply to Lin53]

Hiya, sorry if this is a stupid question but, Lin53 and Jay66 , when you were given NSAIDs, weren't you prescribed something like Omeprazole to protect your stomach?

[Lin53 in reply to Boombiddy]

Yes, I have Omeprazole, which helps a little but if I take Naproxen regularly I still get stomach problems.

[Boombiddy in reply to Lin53]

I am sorry, that sucks.

I asked because my sisters actually had to prompt their doctors to prescribe the stomach protection when they were given NSAIDs, scandalous, and wondered if this was the problem cos you never know.

Do you use one of the strong topical ibuprofen applications like eg Ibugel 40 or suchlike?

Again, sorry if this is a stupid question.

I did, but when I got the relief in one place (knees), realised I needed it elsewhere, ended up slathering it on shoulders, ribs, thoracic spine, sternum, neck... Is it at all possible that a topical gel would help, of do you think you would be the same?

I don't know where you are at, what your questions are or what would help, hence these basics.

I know how irritating it is to get to this forum and have people asking you basic questions you've already dealt with.

I got a few when I joined and introduced myself at Atrial Fibrillation Association. (I asked about AF but someone was talking to me about orthotics!).

But it got better when I had settled in enough to ask my questions. I hope you will find this too.

.

Best wishes from Boombiddy.

[Jay66 in reply to Boombiddy]

Yes I was given Omeprazole, and it was completely ineffective. Apparently, it is a genetic thing. Omeprazole does not work on a smallish sector of the population who have a specific genotype. This article gives the details:

karger.com/Article/Pdf/16966

23andme tests for the proton pump efficacy gene.

I have never been offered a topical ibuprofen gel, which sounds great. I have an ongoing battle with my elderly out of date GP (who I am not allowed to transfer away from because I live in a rural area, and the local town's GP will not accept transfers from the vast rural area practice which I live in).

Sometimes I feel my genes are just out to get me...

[Lin53]

Hi again,

My GP has given me 10% ibuprofen gel for my knee and it seems to have helped. I don't take painkillers regularly, although the rheumatologist says I should, because some days I feel I don't need to. My current problem is my right knee and hip, which I am seeing a physio for tomorrow. After I was diagnosed 3 years ago I was kind of left to my own devices, whenever I get problems with a particular area I go to my GP and get referred to hospital. Don't you find that most doctors know little, if anything, about JHS other than the patient is 'bendy'? When I went to A&E a few months ago with A Fib I mentioned my hyper mobility and the doctor said ' oh you mean you can bend down and touch the floor'.

I'm feeling quite good today because I don't have many problems apart from the locking knee and the aching hip!

[Boombiddy in reply to Lin53]

Hiya, Lin53 , I am so glad the ibuprofen gel is working for you.

@Lin53 and Jay66 re your doctors and 'hypermobility', you need to make it clear to doctors that it is not hypermobility but Hypermobility Syndrome, as 10-20% of the population are healthily hypermobile.

Being someone with a Hypermobility Syndrome, if somebody tells me they're hypermobile I just think "fantastic, how nice for you". But if they say they have a Hypermobility Syndrome, then I understand they're dealing with something serious.

As you probably know already, Joint Hypermobility Syndrome is considered by the experts to be identical with Hypermobility type Ehlers Danlos Syndrome.

So EDS UK do a great card you can carry on your purse which on one side gives what your condition involves, and on the other, gives important advice on handling you (eg they have to be more careful with intubation, & not put tension on stitches, &c &c.)

I would recommend carrying the EDS UK card with you, because it is a great help if you need medical staff to grasp quickly what your condition involves and give you appropriate treatment.

I found it changed everything for me when I was admitted to hospital via A&E recently. When I showed the doctors the card, instantly I was treated seriously, and given respect and careful consideration re treatment. The medics were very grateful, it made their job easier. I also had a copy of a clinic letter (from my neurologist re my POTS diagnosis and management advice), which again was very welcome, and the ward doctor kept to refer to.

I hope this helps you get what you need as I know how painful it is to carry on without appropriate treatment because nobody understands what you are dealing with.

[Jay66 in reply to Boombiddy]

Thanks Boombiddy I will check that card out - I haven't bothered really with EDS UK.

[Curkyperkins]

It was a revelation reading your post. I also discovered I have joint hypermobility at 72 when my consultant told me casually that my Joint Hypermobility "didn't help" my long history of chronic joint pain.

I have just found out, through reading these posts, that other people with this condition also have AF.Since my early twenties I have had a continual health problem with all sorts of weird conditions, such as Ptosis, stomach problems, prolapsed bowel, AF, extreme fatigue,joint pain, etc but thought each was a separate issue. I feel so relieved that it's all one thing and I'm not just a hypochondriac. None of my family have health problems. So glad to have found this forum.!!

[Lin53 in reply to Curkyperkins]

Isn't it great knowing that you're not a hypochondriac (although it does mean you have a chronic health condition)!! I thought I was going mad when I had my 'bad days' and spent the day lying on the bed, only to be quite active a couple of days later. I had an appointment with a physio yesterday as my right knee and hip have been very painful. Turns out it's because I have not been doing my usual exercises and I will have to exercise for ever if I am to stay pain free. In my defence, my equipment (mini trampoline, balance board, etc) has been packed away for a number of weeks whilst we have been decorating, but I'm back on track now. She also recommended Pilates. I have DVD, but it's going to take some practice!

[Boombiddy in reply to Lin53]

Hiya. Lin53 , and Curkyperkins , because with this syndrome we tend to have problems with proprioception (for newbies, proprioception is your positional sense), I have found you need a teacher for Pilates to make sure your arm/leg/&c actually is in the position you think it is, as this really matters in Pilates. And you need Physio-led Pilates.

Sorry if this sounds a bit know-it-all, it's just that since diagnosis I've had the benefit of good advice and treatment which I hope would help people who are not getting that. Also, before diagnosis I was in a 'normal' Pilates class and injured myself.

Which is why I advise finding a Physio led class, and having a solo session with the Physio first to assess you. They can then choose the best class for you.

I am lucky enough to be in a an area where there are a lot of physios who trained at RNOH Stanmore and know about Hypermobility Syndromes. If you aren't sure your Physio knows about these, the EDS UK card is a very useful introduction. EDS UK and the HMSA have some very good info for physios and doctors which you can download too, which also may help.

[Lin53 in reply to Boombiddy]

Thanks for the advice! I have been given some exercise by my physio (I had an appointment last Thursday), so I will initially be using them to target my current problem areas, ie right hip and knee. At the moment I can't lie on my right side in bed because of my hip and she is referring me for a scan on my knee. I have a scoliosis (bent back) so a problem in one area throws everything else out of alignment. I'm also being referred to the podiatrist, I have really flat feet and may need new orthotics. Apart from that I'm not too bad at the moment!

I will also look into the card and the book. I have leaflets from the HMSA and carry one with me to show to doctors. My cardiologist wasn't really aware that JHS can be associated with Atrial fibrillation so I left one with him.

Thanks for your help.

[Boombiddy in reply to Lin53]

Hiya Lyn 53, thanks for reply!

I know the misery of every bit of your body throwing your balance out when you're trying to get comfortable in bed, only too well. It kills my neck and that pain is the worst. And scoliosis definitely can't be helping.

I suppose you sleep with a pillow between knees-to-ankles and a pillow between your arms and same on your other side for when you turn over, and so on?

I spend my nights pillow-herding and am considering a huge horseshoe-shaped thing I saw in a mobility shop, is as long as your body, you can have the long sides to your left & right, and the bit that connects them as your head pillow or between your ankles/knees, so the pillows aren't falling off the bed all night. But it is expensive and made of lots of tiny chips of memory foam (off-gassing?) whereas I prefer wool-filled pillows (wool is brilliant for temperature and moisture management and general support). If I cd sew a long tube and stuff it with pillows maybe...

[Lin53 in reply to Boombiddy]

I don't know what I would do without my V-shaped pillow! I often find it more comfortable to sleep sitting up as it doesn't put pressure on my hip and also have gastric reflux (one more ailment to add to the list!).

[Boombiddy in reply to Lin53]

Glad there's something you can do Lyn as I know you must be so uncomfortable to say the least.

Re the reflux, it is horrible isn't it.

I remember going off like a fountain with reflux and nearly choking (inhaling the reflux), so slept (tried to sleep) upright all night to prevent that happening in my sleep. Scary!

One thing that can help prevent so much reflux, gastroparesis etc. is the low FODMAP diet. It's the result of medical research, ie not a fad diet.

The thing is, many people with IBS-like symptoms and reflux etc. are unable to digest certain types of carbohydrate, which then just hang about undigested and ferment, causing mayhem.

And, for instance, they can make gastroparesis worse (for newbiesgastroparesis is delayed stomach emptying), and reflux, etc.

One example FODMAP foods is wheat. Even if you're not coeliac you may feel ill with wheat. This could be because you can't digest the galactosaccharides in wheat.

The idea is to exclude these foods from the diet for 6-8 weeks then reintroduce them one by one to see which ones (if any) affect you and how much. Then you can decide how much you can tolerate of any particular food.

Anyway, this is being rolled out across the NHS. The best book to get to help anybody who wants to do this diet properly is by Sue Shepherd who was part of the team that did the research an devised to diet. Her website Shepherdworks gives updates as they test more foods for FODMAPS content.

My neurogastroenterologist Prof. Aziz uses the diet as one part of his many-pronged strategy for teaching JHS/EDS patients with gastrointestinal symptoms and he has a lot of success overall.

Anyway, for anyone who can't take Omeprazole, etc., this could be really helpful. It has helped me avoid foods that cause worse symptoms, and take smaller amounts of some that I can tolerate a bit. The 'fountain' experience is less likely to happen as I am aware of what foods might set it off.

Hope this is not too much information!

Best from Boombiddy.

[Curkyperkins in reply to Boombiddy]

I've just got one of these pillows, and had my first sleep with it last night. Fabulous, no shoulder pain and I'm now sitting with it as a "chair" and drinking coffee. Recommend it.

[Curkyperkins in reply to Boombiddy]

Thanks for that, I'm looking y to get a pilates instructor.she had a back injury and now,specialises in people with disability fingers crossed!

[Curkyperkins]

My daughter does pilates and she has recommended I start. Unfortunately I am recovering from cellulitis at the moment and I'm on boring bed rest for three more weeks. I have problems excercising as I have bilateral hip replacements and have had an op on my left shoulder for recurrent dislocation. I also have pins in two toes, and a lower back injury from a car accident 30 years ago. When I see these magnificent paralympians who have so much more challenging problems it makes me think how lucky I am.

My main issue is that I can't really use my arms much for doing my hair and putting on and off my bra!! Apart from that I manage okay, just wish I had a daily hairdresser! I just wish more people knew about JHS as I think they see me as a hypochondriac !!

[Boombiddy in reply to Curkyperkins]

The Paralympic athletes have strong connective tissue, that is why they are healthy enough to do what they do. So I wouldn't feel sorry for them, in fact if you compared notes, it'd be the other way round, they would feel sorry for you with your dodgy connective tissue!

[Boombiddy]

I would highly recommend Brad Tinkle's "Joint Hypermobility Handbook", as it covers all systems of the body, and you can photocopy a section on eg. the ankle, the neck, the foot in EDS and how to treat it, or the gut symptoms, or fainting &dizziness/POTS, etc., and bring it to your doctor so that they know what they are dealing with.

It is also really good on workarounds and everyday advice to make life easier. I have found its advice really helpful.

Dr. Tinkle is one of the world experts in this condition and yet is humble enough to concern himself not just with the research but also with the everyday things that JHS/EDS patients have to deal with.

When I was first diagnosed, this was the most digestible and informative book on the syndrome, and it really helped me to grasp what I was dealing with and how to manage it. If you don't have it already, I think you would find it very helpful.

And, Curkyperkins , if your family and friends think you're a hypochondriac, this book is digestible enough and readable enough for them to 'get the picture'.

[Curkyperkins in reply to Boombiddy]

Thanks for that!!

[Curkyperkins in reply to Boombiddy]

Thank you. I'll have a look.

[Lin53]

So here's where I'm up to at the moment. Sleeping much better since the hip bursitis has all but gone, but still can't lie on my left side because that sometimes kicks off my Atrial fibrillation. Was due to see the cardiologist in November (6 months after my last appointment) but when I enquired about why I had not got an appointment was told there was a backlog, but am still on the list!

I have had a gastroscopy because of my digestive problems but consultant doesn't think I have Coeliac disease, possibly food sensitivity. He has a particular interest in this subject, so may at last get to the bottom of why I have so much indigestion/discomfort. I am currently trying to work out which foods cause this but it's so confusing; white bread is a no-no, wholemeal I can eat! I am seeing him in a couple of weeks, so we will see. Have looked into the FODMAP diet, Boombiddy, but don't want to make any drastic changes until I have seen the doctor.