Hello, possible EDS?

[rosesinbloom]

Hello all, I'm new here, I've never seen these forums before, it came up on google and you all seemed so nice and knowledgeable too, so here I am.

So, it's a bit of a long story.

I used to be a dancer. I've just turned 30.

For years now I have been suffering with a lot of pain in my joints and muscles, it started in my back, but spread to most of my body.

I also have had terrible fatigue, I get exhausted very easily and if I do anything, say like going out for the day, I'm in so much pain and fatigue.

I got diagnosed with fibro and CFS. Anything I ever had was put down to that all the time.

I have suffered with IBS and, well quite frankly some awful bowel troubles for years.

I have also suffered with a lot of dizziness and fainting, in as much as I pass out all of a sudden.

About 2009 I got this really severe pain in my shoulder radiating to my arm, it was so bad when I lifted my arm over my head as I was taking my top off I screamed. I then couldn't move my arm for the pain. This comes back here and there. No doctor examined it, all I got was pain killers.

It was a physio who was later treating me for general pain who said, 'oh it doesn't feel like your muscles and ligaments are attached correctly, they are not supporting the joint there'

Anyway, I have been a bit of a pass the parcel of a patient, referred here, there everywhere and not much done for me in all honesty.

The other week I was going to another physio for knee pain, swelling and it giving away. Anyway, she asked what else I have and I said general pain and she asked if it was due to my hypermobility. I said I wasn't sure if I even had it and she said by my general appearance, I was typical of someone who had it.

Anyway, she did the Beighton test and I was 6/9 where she tested.

She told me to look it up and I have and clearly it does fit the symptoms.

I also have stretchy skin, especially on the neck, but on my arms and hands too.

She sent a letter to my GP, I have to see them next week, in it she suggested I was seen by someone who could help with this.

My question was, does it seem to fit with EDS? I'm thinking it seems to be the umbrella over the things I have been suffering with for an awful long time.

Thank you, sorry the long post!

[chrissie-portland]

Yes. Every possibility. Look on EDS Support UK for your local EDS specialist. There are very few in the UK. As your primary problem is body pain, a rheumotologist is the best place to start. You are suffering dizziness, hence please read the PoTS Uk site too. If you can borrow a home blood pressure machine, you can see if you are suffering from this. (That is my primary)

[chrissie-portland]

It can be very daunting. Our whole body is held together with connective tissue. Having this unique collagen enables to be able to do so many interesting things, but unfortunately when it becomes troublesome it effects EVERY part of our body. You will feel soooo much better once you gain formal diagnosis and this will give you a pathway onto which to gain good health. Gentle hugs.

[knanette3]

Yes it fits in with EDS, the problem is in getting the consultants to help, in southern UK I'm always faced with a blank face and the word NO, look for the youngest GP possible(it is more likely to have been in his training), start looking for other family members with similar problems, get as much help from the internet as possible,and I wish you all the luck in the world , you will need it.

[rosesinbloom]

Thanks so much or the replies.

As I said, I've spent possibly ten years or so with the pain and fatigue and issues. I don't know if anything will be fixed or controlled and at the moment I don't really have any expectations.

I just wondered if the fact I was hypermobile and had all of these other issues kind of fitted with EDS, which is the thing that came up when I was searching HMS with my symptoms.

Is EDS the same as HMS? Are they one and the same thing? I don't know, sorry.

I live in the south, I am in a London post code, in the very outskirts of London. I am unsure what help will be available to me, I did read my physio letter and she asked for me to see someone (rheumatologist) who has experience with HMS. I wonder if there is anyone near me who can help with this, I have already seen a couple anyway before who didn't do any such testing as the physio did.

[trekster22 in reply to rosesinbloom]

I highly recommend the RNOH Stanmore hospitals programme. They can do outpatients or inpatient physical rehabilitation. Its a specialised programme for chronic pain sufferers including CFS, fibro and EDS/HMS folk.

HMS is a type of EDS, type 3 to be exact but some patients have crossover with other symptoms like skin, heart, blood vessels.

They couldn't find any genetic defects when I was tested so im a type 3 although I have some arthrosclasic symptoms of flexible club feet and easily dislocating hips.

[Boombiddy]

Hiya, being in London is the best place to be if you have HMS/EDS. I live just outside London and have been very fortunate to get the right referrals.

Sorry this is long but the reason is, I have experience of being referred to the very best and how to go about being referred, which I hope will be helpful.

Also, first go to the HMSA (hypermobility.org) or EDS UK.

The place to get referred to is the Hypermobility Clinic at UCLH. The address of the clinic has a slightly odd format which makes it easy to miss on the Choose and Book system so copy it from the HMSA or EDS UK website and bring it to your GP.

How I got myself referred may help you though something different may work for you.

Because I was told by an excellent Physio that I had Hypermobility Syndrome, in 2010, I looked it up and spoke to the HMSA who at that time were brilliant. Donna at the HMSA could identify so many things that I had problems with as being part of the picture of a Hypermobility syndrome.

She is (or was: check this), the HMSA's medical advisor. She advised me to write a brief letter to my GP to the effect that:

despite my (excellent) physiotherapy and doing all my Physio exercises I continued to deteriorate, I continued to have trouble with laxity of tissues/joints, and had spoken to the HMSA's medical advisor who had urged me to get checked out by the Hypermobility Clinic at UCLH. "I enclose the address of the clinic for your convenience as it is easy to miss on the Choose and Book system". And, to include a leaflet from the HMSA on the condition.

(At that time the HMS dealt only with Hypermobility Syndrome/ Hypermobility EDS. Ask them or EDS UK what to include. Of course you cd send something by EDS UK, whichever.)

And, to send it 2 weeks before my appointment with her, to give her time to assimilate the info and look over my notes.

The result was, GP thanked me for being so clear, and referred me. I saw Dr. Kazkaz at the Hypermobility clinic within 6 weeks.

Now, this is where it gets good.

The advice from the HMSA (I didn't know about EDS UK then), was to send, to arrive 2 weeks before this appointment at the Hypermobility Clinic, a personal medical history, a list of your current symptoms, questions and concerns, and a family medical history if you can cobble one together. Max 1 A4 each, if you can manage it, something she can scan her eye down.

This is so that if you get brain fog on the day you still can get your point across and Dr. has something to work with. (The EDS /HMS doctors welcome this, it makes their job easier.)

There is also a check list of things to circle before you go in, helps doc quickly get the picture.

And now it gets better:

Dr. Kazkaz got me referred to the Autonomic Unit at the National Hospital for Neurology and Neurosurgery for the proper tests for POTS.

And to Professor Aziz at Barts, for all the gut stuff. He is a neurogastroenterologist. He and his team are utterly fantastic. He only takes patients with connective tissue disorders like us so you need your EDS/HMS diagnosis first.

If you look up my posts (sorry, I mean replies) here you will get more info on these.

She also referred me to local Physio, with a big wadge of instructions and guidelines for dealing with this condition.

She can also refer you to Stanmore, for the Hypermobility syndromes Rehabilitation Clinic to help you manage the condition, pain, etc. Dr. Cohen there is part of the group of doctors who deal with Hypermobility syndromes.

So, your first stop is the Hypermobility clinic at UCLH, it's like a gateway to the others. Dr. Kazkaz there will get you referred to what you need.

If you have a GP you trust, great. You could ask at the surgery which of your GPs have a preference for working with patients with chronic conditions, one of these GP's is more likely to stick with you and work with you long term as a team. You need that because it takes a long time for you and your GP to work through these referrals.

By the way, there is a dancer with EDS Isobel Knight who has written a couple of books on it, you cd look her up on Amazon. The best book to start with in my experience is by Brad Tinkle, the Joint Hypermobility Handbook. A friend used to swear by Rodney Graham and Rosemary Keer's book "Hypermobility Syndrome: Recognition and Management for Physiotherapists". Very helpful for injuries.

Wishing you all the best, from Boombiddy.

[brdgre in reply to Boombiddy]

Very helpful. Thank you

[rosesinbloom]

Firstly Boomsbiddy, thank you, so, so, so much for all your excellent post and details, it wonderful to have so much information for me, going forwards.

Sorry, I can't say all I want to, I will come back to it tomorrow to post more, just because I am very, VERY foggy today, I can't really focus to cut through it today!

One of GP's sent me for further cardio appointments for POT's testing, however in cardio they didn't really now what it was and I think misunderstood why I was referred back to them.

I think I will call where you said you did on Monday. I have a GP appointment on Wednesday about the physio report, so I can bring this all up with them.

This may sound so silly, but I don't want to waste their time, if that makes sense. It's like I feel, what if it's not it, what if I don't have this, you know.

I've been to so many doctors with lots of questions before, hope that it was something else, I've never thought it was all down to fibro/cfs, something in me never believed it. I have been told by so many GP's to just accept it.

Something in me thins what if it's not it. I feel like it all fits, my physio says I have the hypermobile joints and I have had all of these other symptoms too and the stretchy skin. I just feel like I don't want to waste their time on me.

As I said, I will reply more to you Boomsbiddy, I just wanted to lay down some of my initial thoughts and to thank you so, so much for the help.

[rosesinbloom]

Oooh, also to add, I already was sent the HMS booklet, I got given the older one by the physio as she was out of the new booklets, but she gave me the number to call for the updated boolet and they were very helpful and sent it to me.

[Boombiddy]

Hiya rosesinbloom,

Thankyou for reply! Especially cos it must be very hard to get your head around this at the mo, it's hard enough on a 'good' day.

The fact that the Physio gave you the leaflet and the number to call is a fantastic validation. Physios are not stupid.

I i understand your nerves. Problem is, if you do have the condition you have probably got used to 'just putting up with' things, even horrendous things, it's become a habit. It can make you feel despondent, and it is a habit that you don't have to keep. It served you well when there was no other option, but now you will get other options. I am so glad your Physio has given you that push in the right direction.

If you can't get hold of the HMSA quick you can always try EDS UK.

I wish you every success and look forward to hearing how you got on, if and when. (No pressure from me, I am just glad the info has been useful).

Best from Boombiddy.

[rosesinbloom]

Thank you Boombiddy, yes it is hard, especially to get started, once I've started it seems I can carry on typing, but getting over the initial push is the hardest. The fatigue has been solid or a few days!

Anyway, yes, she was super helpful, she said she presumed I had it just by the look of me and how I sit and walk and look. She did the scoring and said I was, but most likely was elsewhere (shoulders are an issue for me) and gave me the info and told me to call them and ask for the newer version of the book as it was better. She wrote a helpful letter too.

As I said, I just worry I will be wasting their time, I always worry about it. Like as if the GP's rll their eyes when I come back in, or they think I'm grasping at straws. Well at least this time it has come from the physio with an aim to get me referred.

I did a little google on HMS/EDS specialists and a name that came up was Dr Alan Hakim.

I wondered if anyone knew or had experience of him? He seems to be at my local hospital, I believe. So I was wondering i I would be referred to him, or if I should ask to go to UCHL.

I will definitely be phoning tomorrow though, to at least talk to someone about my worries/doubts. I don't know, I worry it's just another round of pass the parcel with me and I'll be sent off yet again.

[Boombiddy]

Thankyou for your reply!

Well it's funny you should mention Dr. Hakim. He is the real deal, one of the leading experts, as you can tell from his articles on the HMSA, and he is a thoroughly nice, approachable person.

He does not do NHS work re the EDS, I think in the NHS he does gut, not what Prof Aziz does however.

He does do EDS/HMS as a private doctor, though, at St. John & St. Elizabeth hospital in St. John's Wood (short walk from the tube). And somewhere out Far East up toward Epping, I can't remember the name of the hospital. (Not Whipps Cross, that's his NHS job). His fee a few years ago was £400, is dear but his fee includes being able to contact him for advice. You could phone his secretary at whichever hospital is easier for you and she could tell you what's included and how to proceed.

I went with my sister when she went to see him as a private patient because she could not get referred by her (pretty behind-the-times) GP. He was very thorough and his clinic letter to her GP was very helpful too.

BTW, The NICE guidelines say your GP has to work with a private doctor you've been to see, not ignore them.

I would go for the NHS referral. You have every right to it. And being in London it's even local, so we hope that will help.

If you really were knocked back then you could consider Alan Hakim.

Dr. Kazkaz (NHS) and Dr. Hakim are both very thorough and excellent. I saw Dr. Kazkaz, my sis saw Dr. Hakim, we were both treated very well.

But, read again above how I approached my doctor. Naturally you will choose your own way, but think about giving your doctor time to absorb the info as I did. And make sure you have a double appointment booked to discuss it. Doctors like the rest of us need time to consider.

Hope it all goes well for you whatever you decide.

Ps re 'wasting their time', what really is a waste of your doctor's time, is not getting you sent to the right people. By sending you to get sorted out by the right ones, (s)he will save time and money in the long run. When I think of all the expensive dead-ends I've been sent to before the HMS/EDS diagnosis...

And recently I felt the same as you, felt I should 'just put up with it' about something I assumed was my POTS. In the end I called 111 for advice and they only sent a ruddy ambulance! It turned out that if I had not called 111 I could have had a stroke! (It wasn't my POTS it was Atrial Fibrillation and I ended up in hospital for a week).

So that's a lesson, even when you get a diagnosis, don't assume everything is your POTS or EDS.

Meanwhile though, don't just put up with things. Remember, you & your family pay the doctor's (substantial) wages in your taxes.

Best from Boombiddy.

[trekster22]

Hi and welcome, yes it does sound like hypermobility/EDS considering the high score you got on the Beignton tests.

Have you also been assessed for POTS? Postural Orthostatic Tachyardia syndrome. It causes the fainting and sudden passing out you mention. Some folk find salt helps their POTS others can find manual wheelchair pushing can help. Recently there was a local news article about a patient whose getting a specially trained dog to help her.

I hope your GP provides you with some answers soon. Im also a fibromite, have had CFS and have really bad IBS-C. All are commonly occurring in EDS folk unfortunately

[rosesinbloom]

Thank you for further replies.

It had been considered that I may have POTS, because my symptoms matched and I had a discussion with my GP with it.

Yesterday and this morning I had a phone call from the cardiac doctor, I had had a monitor for 24 hrs and it showed some sinus blocks, or something. Anyway, at first they thought I may need a pacemaker, as this also showed up a couple of years ago when I had one, but they said that considering my age, it may not be needed. I was slightly confused as she said a pacemaker may alleviate 'some symptoms', but not them all, which obviously makes me wonder why and i it is causing some, even though she says it is nothing.

Also she said it doesn't seem to be POTS as my rate wasn't too high or low at any point, so there's that.

I know when I went to the clinic they did my BP laying down and standing and it changed a lot on the bottom number, but an increase. So laying down I was 124/70 and standing I was 120/90, which seemed to the nurse quite a jump.

But the example above that I just gave is one reason why I am a bit weary of going to a HMS/EDS specialist, because this sort of thing keeps happening, it seems like it fits something and then it's not. It just feels too much, I get my head into thinking it could be that and it's not. I feel like I'm wasting people's time and I feel the doctors think that too. I don't know, I don't want to be batted away again, I just don't know.

[Boombiddy]

Hiya rosesinbloom , don't despair, take what the cardio can give but remember (s)he may be one of the many who **think** they understand POTS.

POTS criteria **for the kind of POTS usually associated with EDS** include a rise in pulse rate of 30 beats/min on standing. Although you can have chronically low BP generally with this, it is the **pulse rate on standing** that counts.

Today, your best bet is to ring STARS (Syncope Trust) who deal with POTS and other autonomic nervous system disorders. In fact I would urge you to ring them. Jenny there is very knowledgeable.

When recently I was diagnosed with Atrial Fib, Jenny ***recommended the right cardio for me who knows the autonomic nervous system***.

Jenny explained to me that cardios fall into 2 broad camps, 'plumbers' and 'electricians'.

The 'plumbers' deal with the valves and suchlike, the 'plumbing' of the heart. The 'electricians' deal with the conductivity of the heart, the electric system that makes the heart contract and regulates your rhythm and are called electrophysiologists, cardios who have specialised in heart rhythm disorders.

With words like heart block, pacemaker being discussed, and with your cardio's faulty idea of the diagnostic criteria for POTS, it sounds like you might need an Electrophysiologist (heart rhythm specialist) who understands POTS. There are a few in London.

STARS share an office with some cardio types (Atrial Fibrillation Asociation) so can also find out cardio stuff enough to understand the bigger picture.

***Remember, the only way to stop getting nonsense from doctors who think they know POTS, EDS etc. is to get referred to the Hypermobility Syndromes specialists.***

But for now, a good plan of action TODAY is, ring STARS. Make notes. Then reward yourself with a nice cup of tea or something enjoyable.

I know it must be so confusing right now, but you are beginning to get info you can use. The heart stuff must be bewildering, but whether you have POTS or not it is good to have found out about the heart block.

An Electrophysiologist might be a better choice of cardio to deal with this heart block problem, speaking to Jenny at STARS may help clarify this and set you on the right track.

If you are perplexed, keep asking questions, and if you can, come back and let us know how you get on, we're all rooting for you.

Wishing you every success in getting sorted, hugs from Boombiddy.

[rosesinbloom in reply to Boombiddy]

Thank you so much Boombiddy, you are so helpful and informative.

I think I will come back to this, but for now I just eel like leaving this cardio stuff to the side, at least for this week, because I am feeling very overwhelmed at the minute, I had a bit of a panic attack earlier and I just feel like it's all too much.

I have my dr's appointment tomorrow, I think we are going to discuss the referral to a HMS specialist as the physio has asked for that.

I think it's just, I don't want to go and be turned around again, I know I fit a lot of the Brighton criteria when reading it, but I just feel like I could be turned away again and be in limbo, yet again.

I think I'm having a bad day, but I'm going to go tomorrow and try to call today the HMS call line.

[Boombiddy in reply to rosesinbloom]

Yes rosesinbloom , I would feel the same, it is such a lot to take in. Just rest and relax. Only do what you feel like.

XBoombiddy

[Boombiddy]

This is cut‘n'pasted from the STARS website:

What is PoTS?

Postural tachycardia syndrome (PoTS) is an abnormality of functioning of the autonomic (involuntary) nervous system. It is defined as an increase in heart rate of over 30 beats per minute (or to higher than 120 beats per minute) (40 bpm in those age 12-19) when standing upright. Typically there is no postural fall in blood pressure, although fainting (syncope) can occur.

[rosesinbloom]

Ok, well, I had my GP appointment this morning.

It didn't start well, I don't think. She seemed to wonder why I needed it and what with me not having much confidence in it myself, I didn't really know what to say. She was saying that being hypermobile is a good thing and keeps joints loose etc. My mind was really foggy, so I don't really know everything that was said.

Anyway, she had a look at where it can be and I told her it was UCL, so she put in a referral anyway, which is going to be sent through the post, hopefully. Hopefully it's the right one and department, but we'll see, I think it is.

I'm finding everything a bit of a struggle at the minute, so it didn't help going today. I feel like I am wasting everyone's time and I feel that they feel I am too. I hope this will help and maybe I can just be out of their hair, or have a steady plan that can work.

We'll see.

[Boombiddy in reply to rosesinbloom]

"I told her it was UCLH" Does that mean you didn't give her the address of the Hypermobility Clinic?

If you didn't, you could send her that in a brief letter "for your convenience because it's easy to miss on the Choose & Book system". (Get it off the HMSA or EDS UK site).

(If you want you can say "not sure if I gave you this as I was feeling foggy that day").

This is very important, because it is not the general Rheumatology you want, it's the Hypermobility Clinic (which is within the Rheumatology dept. but separate).

If you did give her the address, and/or she is sending you to the Hypermobility Clinic, **well done**, you're on your way!

[rosesinbloom in reply to Boombiddy]

Well, she saw Dr Kazkaz and there was a note that said that referrals went through their rhum department to the hypermobility and it had to be requested. But in all honesty I have been doubtful about it because the woman from the HMSA website got back to me and she said it will most likely be denied anyway, as now on their website, referrals to Dr Kazkaz and the team can only be obtained from a consultant and not a GP.

I can only wait and see now.

[Boombiddy in reply to rosesinbloom]

Absolutely and I'd forgotten that, I am sorry!

If your GP looked up Dr. Kazkaz then that means she was willing to find a way to get you referred to her, which is awesome!

Just hold on, you may be on your way!

Congratulations on sticking with it despite how low you have been feeling.

Best from B.

[rosesinbloom in reply to Boombiddy]

Thanks Boombiddy, fingers crossed! She saw the name and where it had to go to get it, so I believe that was okay.

We'll see about if it was okay without a consultant, although the lady said they are very strict with that as they had too many from GP's.

But I am feeling a lot better in general, that's got out of the way and whatever will be will be. I have also made the decision that should it not come through I will see Dr Hakim myself at the Holly, which is local to me and it will be worth it as my health needs to come first. So I think taking that decision has lifted the weight of everything off of my shoulders now. I know what I am going to do now.

Thanks for all of the support here.

[Boombiddy in reply to rosesinbloom]

So thrilled for you rosesinbloom ! Let us know how you get on, won't you?

Xx Boombiddy.

[rosesinbloom in reply to Boombiddy]

Of course, thank you so much.

I am presuming, with waiting lists and also i I don't get it, it will be around January that I see someone. That's just something I have in my head anyway!

[Boombiddy in reply to rosesinbloom]

Yes I expect so, as a friend was saying there are delays with the strikes an' all. Though there can be cancellations and you could get slotted in faster.

It's good to have time to prepare, deal with the other stuff, get your facts together, have a break...

It'll be good whenever though, won't it.

Xx

[rosesinbloom]

I just wanted to update this thread a bit.

I hadn't heard anything and was thinking of chasing it up with the GP but kept putting it off. I went out and was talking about it with a friend and when I came home I had an appointment with Dr Kazkaz for January 17. I was really surprised as the lady on HMS call centre said they do not take anyone from a GP referral.

I will have to change it as it's too early for me to get there as I will have to go by public transport and I will never be able to navigate it during the rush hours.

I have to say I'm worried, just in case they say I am wasting their time.

I know that my body is giving me all of these troubles, my right knee keeps clicking and sticking out of place lately. But I've seen a lot of specialists and I do wonder.

Hope everyone is doing as well as can be expected. Thank you all for your help.