Diagnosis?

[MemorySticked]

Hi, I'm new here and I was wondering if anyone could help me out at all? I've been having bad pain in my joints and body for about 6 months or so now, and pain in my back for about 2 years. I've been going to Drs for years and no-one has seemed to help, but then my hydro-therapist (i was referred for my back) said that I am hypermobile and with the fatigue and constant pain I have she suggest I look at EDS.

I've looked at the criteria for it and I score 8/9 on the Beighton Score and On the Brighton score I think I match the major ones, I've got over 4 on Beighton score and I have constant pain and have had for 6 months in my wrists, elbows, knees, hips and ankles, with intermittent pain in my neck, shoulders and fingers and toes.

I dont know if I have subluxation, but sometimes I feel like my shoulders and ankles like 'move out of place' it doesn't really hurt though, just feels odd, not sure if that's the same thing. I do also have to wear glasses and I believe their for near-sightedness and a stygmatism (spelling?).

I'm just wondering if it's worth writing all of this down for my visit to rheumatology, as intially my doctor suspected CFS, but this made me think it could be something else? Do you think it could be EDS?

Thank you for your help

[MemorySticked]

I feel like I should also mention that I do have IBS type problems and I seem to bruise quite easily and I have a brain fog quite often, I believe these are also signs that it might be EDS? I do also have dizziness, but I'm not sure if that is a vetibular issue as I am also being investigated for Menieres Syndrome!

[Kate37 in reply to MemorySticked]

Hi. I have eds and your symptoms certainly match mine. It can be quite difficult getting the diagnosis from the medical profession as overall their knowledge is quite limited unless you see someone with a specialist interest in it. The hypermobility team at the Hospital of St. John and Elizabeth in London are amazing but are a private hospital unfortunately. They're well worth the trip if you're not happy after seeing the NHS locally. I hope all goes well for you. I've found a low fodmap diet can really help with the ibs and fatigue and a low sugar diet can help with the pain.

[MemorySticked in reply to Kate37]

Thank you so much for your reply, I just feel like I'm going a bit crazy at the moment with Dr's not really believing that the pain I'm feeling is real! I've been referred to a rheumatologist, so I'm hoping they can provide some kind of diagnosis, but I really feel like this is most likely what it is. I am on low fodmap for the IBS, but it's difficult to stick to as it's quite expensive! Never heard of low sugar for the pain, but will certainly give it a go! I'll keep that in mind about the hopsital, I just hope it doesn't get to a point where I have to try pay privately! xx

[Anameescapesme]

I think you should speak with a health practitioner to establish a diagnosis. EDS is a complex Syndrome of many factors. Many people manage everyday life with the correct support.

Others not so. I'd avoid Dr Google and ask for GP referral to a Genetics Consultant who will be able to establish the cause and may give a diagnosis.

EDS is a managed condition and you will need to see several specialist consultants to enable this.

Subluxations are initially very painful, subsequent ones in the same joint can be less so as the surrounding musculoskeletal system develops a 'memory' and finds relocation and further subluxation easier.

Sight is mainly implcated in Vascular EDS.

Hope this helps.

[MemorySticked in reply to Anameescapesme]

Thank you for your reply, I've spoken with my doctor several times over the last 6 or 7 months and they just keep giving me tablet after tablet, saying it's anemia causing the pain, then that it's low vitamin d causing the pain, then the good old fall back of it's my weight. I understand I'm slightly overweight, but I know that wouldn't cause me this much pain!

I have been referred to a rheumatologist after basically begging my doctor to let me see a specialist, so hopefully they will be able to offer some help!

Yeah, I did find I used to have pain my joints that 'slide' but it's just now like a strange sensation where I'm used to it I think!

Thanks for your help, I'm just hoping I know what it is soon so I can start to manage the pain!

x

[Anameescapesme in reply to MemorySticked]

It is a truth that carrying extra weight won't be helpful and that a lot of EDS treatment is about self help.

Physio will expect a huge commitment from you with Pilates based exercises with weights added over time. You can start to get ready for this by making whatever commitment you're able to. Building strength around the whole joint is the 'way' and for many this helps - use it or loose it. It can be exhausting and exceptionally difficult and is a life long commitment.

I would say that it doesn't work for everyone but you will need to give it 100% to give it your best shot.

The pain gateway with EDS (if this does refer to you) is very different. Essentially it's classed as a non inflammatory condition and NSAIDs aren't effective long term. Paracetamol works on a different pathway and may take the edge off but can also lead to withdrawal pain.

Many practioners will advocate pain clinics for help with coming to terms with and coping strategies for pain. (With varying success in our experience). Heat is one of the best and pressure.

Opioids can be used in extreme cases but as last resort for many due to the side effects of these.

Make the most of your appointment by writing down the things you're most concerned about and how they impact on you.

Can you/ do you manage? What answers do you need. Many don't like to state EDS and look elsewhere or refer to mental health sadly.

It is worth remembering however that EDS is just a name and its management and support that you will need - and will have to push for should this be diagnosed. Any chronic illness diagnosis also impacts on financial decisions such as obtaining loans, mortgages and life insurance.

I wish you all the best, and - you may think this odd, but I also wish you well and EDS free. It's not a diagnosis anyone wants ❤️

[MemorySticked in reply to Anameescapesme]

I totally understand that my weight isn't helping, and I am trying to resolve that (I'm seeing a health trainer and putting plans into place) but I also feel like the doctors are saying that's the sole cause which I don't believe at all!

I am fully prepared to put in commitment and build the strength and my strength, I just need to know what it is that I need to do, which I'm hoping the rheumatologist will assist with.

I have written down every symptom that I have even I feel that it may not be relevant as it may help rheumo decide on something to help me. Yeah, I have been referred to Mental Health too, as I suffer from really bad anxiety on top of everything else!

It doesn't sound strange at all, it's not that I want an EDS diagnosis specifically, I just want a diagnosis of some kind to know that I'm not crazy and that there is a medical reason for this pain, not just in my head!

Thank you for your help and support though, it really means so much to me, as I feel like there aren't many people who understand what I'm going through, so it's nice to speak to people who do! <3

[Silvergilt in reply to MemorySticked]

I feel you, I always get my weight blamed for everything, to the point I suffered for years without a diagnosis for my RA (I was a bodybuilder, and THEN I started getting sick, I wasn't fat then, thankyouverymuch!). It may even be the bodybuilding is what has masked my EDS for so long as I did a lot of strength work: as a result my joints don't subluxe like other people's (but as I'm being investigated for vascular EDS it might explain why I had so much bruising/injury/torn-something-or-other/weightlifting made me feel worse). Combined with the RA, I don't have the same profile for EDS, but there are other indicators - none of which anyone noticed.

My metabolism is shot and due to muscle memory, losing weight is a nightmare for me. And if the diagnosis comes out as vascular EDS I won't be able to lift anymore anyway (only way I can lose weight at all). So, contrary to the belief of many, I won't even try - I tend to follow the Health At Every Size option and I now work at doing yoga, which helps with strength and flexibility without all the strain of weight-lifting. I admit I used to think yoga was a bit of a 'wimpy' workout but man, some of those poses are hard to maintain!

I am currently on tenterhooks waiting on the yea or nay for vascular EDS. I feel you; It will answer some questions and may even get me some more help (blood pressure help would be great as all the 'lose weight/eat less salt' obvious advice is pointless - I don't cook with salt at all, drives my boyfriend nuts! and lose weight...yeah, see above). But even so, it seems like EDS is the new fibromyalgia (which I also have): namely 'yep, you have it, but there's nothing we can do, here's a leaflet, good luck!'

I hope it at least helps to fill in the pieces of the puzzle for you. It isn't fun and feels a bit like a yay/boo moment when the diagnosis is in, but for me personally, it's good to know it wasn't 'all in my head' and if it's in my notes, maybe some health pro in future will take me more seriously.

I wish you strength.

[MemorySticked in reply to Silvergilt]

I'm sorry to hear that you get everything blamed on your weight too, even when you're not even big! That sucks!

I think Yoga might be the way for me to go too, it seems gentle enough but also should help build something up in terms of muscles! I didn't actually realise but I think my joints are sublaxing, cos they feel like they're sliding around in my ankles/shoulders etc!

That's what I'm hoping for is a diagnosis just so I can look into how to actually help what I have, I've tried to lose weight by going to the gym etc but that just really knocked me out and I was in agony after (from yano... jogging/running XD) so clearly a more gentle way is the way to go, but I just want to know what to focus on!

My other issue is that I can't seem to hold down a job as it just kills my body and it's like it rebels all the time, but talking to employers and saying ''oh it could be this, not sure'' isn't very helpful and doesn't give me much of a leg to stand on in terms of reasonable adjustments, when I don't even know what reasonable adjustments they should make!

I hope that you do get your diagnosis of vascular or not, and I hope that it isn't that type so you can carry on lifting, it does sound like something you're super passionate about, so fingers crossed for you. Please keep me updated?

Thanks for your help <3

[Anameescapesme in reply to MemorySticked]

Getting a diagnosis is a definite help regardless of what it is. You're doing everything you can, it's a rock and hard place situation with? conditions.

Focus on getting the answers and help with what you present with now. EDS is a 'spectrum syndrome' some elements you may have 'got used to' and not even considered that they were unusual.

Rheumatology is a good start but I would advise you request them to refer to a Geneticist should you still have unanswered questions.

There is no genetic test for EDS lll but skin hyperextensibilitytests can be done from a small skin puncture.

Other tests are via blood DNA for other EDS types.

These are carried out at the specialist EDS diagnostic service at Northwick Park, Harrow and Sheffield.

xx

[MemorySticked in reply to Anameescapesme]

If I still feel I have unanswered questions, I will certainly request to be seen by a geneticist. I feel like I've written down everything, even the things that I don't think are important, just in case they are

Ahh I did read there was one type that doesn't have a test for it, so that must be it, the hypermobile type right?

I didn't realise there was a specialist service in Sheffield, if the rhuematologist doesn't help I might ask if I can see them as the Sheffield team have already helped me in the audiology department and they were amazing

<3

[Country4eva]

CFS also comes along with EDS. I have developed 4 curves in my spine. Trigeminal neuralgia, TMJ, joint pain, insomnia, anxiety, depression, trouble swallowing and osteoporosis. The pain is so bad sometimes ER visits are necessary. Been on pain management for 10 years. I have also had 9 bowel obstructions. EDS has really affected me in so many ways. Please get u a duagnosis. Eat healthy and try to do some swimming. It aint easy but you have to fight for quality of life. Dont let the medical profession dismiss u. I have had so many dismiss me because where i live is very rural and they never heard of EDS. You are not crazy. You have something you didnt ask for. Just learn to oace yourself and dont over do it. Good luck and u are in my prayers😇

[MemorySticked in reply to Country4eva]

Thank you for this, I'm sorry to hear that it has such an impact on your quality of life, but you sound like you try not to let it get to you which is so strong of you

I'm doing my best to not get dismissed and get a diagnosis, even if it isn't EDS I just want to know what it is so I can remedy it and try to help my self / get some pain control

Thank you so much xx

[Country4eva in reply to MemorySticked]

I have been dismissed so many times. I hope you dont have eds but with emthe s/s it sounds like eds. Some people gave different levels. My just seem to take off after my first bowel obstruction in 2006. I had three that year in 6 months. Then last year i had a hyperparathyroif suck the calcium from mybones now my bones are aged at 80. Dont let peole brwak ur spirit or put you down for doing what u have to to survive. God Bless

[MemorySticked in reply to Country4eva]

Thank you for your help it means so much, that everyone is so helpful and supporting on here, I don't feel crazy when I ask for help on here x

[Jay66]

Many conditions, some of which worsen over time without treatment, resemble EDS, so a correct diagnosis is essential. Write down everything you have, even if it doesn't trouble you much, before your meeting with the rheumatologist.

The thing with EDS is, long before you get diagnosed correctly, you may have already put weight on because moving hurts, so the doctors have a ready excuse to blame your excess weight for all your symptoms. Then, you may have become down and a bit depressed because of the pain and your situation, perhaps being unable to work full-time, so doctors can point to depression/stress as a cause. Additionally, there is a positive co-morbidity between anxiety disorders including OCD, and EDS.

I have had both weight and stress blamed for all my other ailments in the past, so I speak from experience: it is totally demoralising when this happens. My shortened list of misdiagnoses/causes of other medical problems: asthma, anaemia, stress, being overweight (causes absolutely everything, apparently), hysteria (dental), unusual position of nervous system, too many nerves in one area. These were all just plain wrong.

The diagnosis does not change the treatment of these individual ailments; it changes how you and the doctors perceive your illness - all of a sudden everything is linked, everything is understandable, so I think a diagnosis is hugely useful just for your peace of mind. It will, though, put your life and travel insurance premiums up.

I had been thinking that maybe I was just making everything up - a fantasy of pain and fatigue all in my head - until the correct diagnosis joined all the dots and suddenly everything became clear. I haven't bothered my doctors with much since then - I use the online communities as a good source of information, and try to organise my own treatments/therapy. With a diagnosis it is easier to take ownership of your treatment options. I am content now that I understand the cause of the problems. I am not on top of the pain issue, but I can live with it.

[MemorySticked in reply to Jay66]

This sounds exactly like the trouble I've been having, I have certainly put weight on lately (but I was bigger before anyway) & this has certainly been used to blame everything on! I agree it does cause everything! :')

I have also have depression and stress linked to everything it was the first thing the doctors suggested when I went saying I was so tired and in pain and couldn't cope, so I was signed off work for 4 months. When I went back I couldn't handle it so I left and got another full time job and it made me so ill they laid me off after 2 weeks, so I really don't think I can do full-time work, but trying to explain that to people just causes more problems, because obviously, we don't look sick... there's nothing wrong supposedly!

I'm glad to hear you finally did get a diagnosis, that gives me hope that someone will actually listen to me! I've definitely had most of the similar diagnosis that you have had!

I think I'm definitely having a period of worse pain lately, especially in my shoulders in hips with them feeling like they're constantly sliding! O.o

I hope you find a way to help with the pain as I don't like hearing that other people are in pain! I agree I'd just like the diagnosis for peace of mind as everything is seemingly unrelated and invisible to everyone else!

Sorry for the long reply, but thank you for sharing your story it definitely gives me hope that I'll find a diagnosis of some kind!

x

[Jay66 in reply to MemorySticked]

Hi, I wish you a speedy diagnosis!

As for pain, I have been used to tolerating a general low level for a long time, so I don't expect complete pain removal - I think that is an unattainable goal. I am happy if I can perform most everyday tasks. Fortunately, my OH supports me financially, because trying to work is beyond me.

[MemorySticked in reply to Jay66]

I'm not expecting total pain removal but thank you for the advice I can tolerate a low level of pain especially after the pain I've been feeling for months now!

I think that work is beyond me as I've nearly lost several jobs (if I hadn't have lft they'd have got rid of me) and I did lose one job because of it! I might be able to do very limited part time work, dependent on what it is , but we'll have to see my OH is very helpful and supportive so that is good