Advice needed

[Laurakins]

Hello I desperately need some advice. I'm 32 years old and all of my life I've felt as though I've had one problem after another and feel I'm becoming a hypochondriac and that people are thinking "Oh yet another problem" my knees and elbows bend backwards, my jaw clicks and is painful at times. My hips constantly click. I feel tired at times and struggle to get out of bed some days. I was referred to a cardiologist for tachycardia but wasn't concerned as it wasn't in an irregular rhythm but at times it makes me feel faint. My bowels are very irregular and now I feel quite anxious and low in mood which I feel could be because I feel it's one thing after the other. My Gp doesn't seem overly concerned with any of these symptoms and has just prescribed me anti-depressants. Has anyone else had these problems and is it worth going back to my GP to see if I do in fact have Ehlers-danlos? Any advice would be helpful. Thank you

[cyberbarn]

You need to think about what you want here. Many people have those individual things going on, which are not life threatening, and don't worry about it. Which is probably why it feels like your GP isn't overly concerned.

You may well have Ehlers-Danlos but what would you hope to get from a formal diagnosis? There is no treatment for the condition itself, and it sounds like most of your issues have been looked into. They can treat some physical symptoms causing problems with things like physio, but your problems won't go away.

It sounds like you might need some support for how you feel about this if you are getting down about it enough to take anti-depressants. A formal diagnosis might not make any difference to that. Could you ask for some talking therapy instead of the antidepressants?

And just a little practical idea about your jaw clicking. I had a subluxing jaw in my early 20s. the consultant sorted out some impacted wisdom teeth and his parting words were, 'don't try to move your jaw so that it subluxes, take care with what you eat and never chew chewing gum.' I am glad he said that as I have always tried to keep my jaw joint in mid line, and I have never had problems since.

[Steenygirl1]

Cyberbarn, I tend to disagree with you on this. Getting a diagnosis for any condition means you get an explanation for what is going on in your body and more importantly advice on how best to manage the symptoms and prevent as many problems later in life as possible even if the condition is not curable (most actually are not). But I would say even more importantly it gives an explanation to other people as to why you are not always at your best including friends, family and crucially the medical profession. They tend to be more understanding when they have a label and you are able to get access to services to make your life better. People feel hopeless and helpless when they are unsupported. Having a plan of action tends to give hope which lessens any feelings of despair, anger and sadness, or as many people call it, depression.

[Hidden]

Hi, to me it sounds that it could be EDS and maybe an element of PoTS too. I would try for a diagnosis if I were you as it's good to have a reason for all your health problems. It's not always easy to get a diagnosis, your best bet might be seeing someone at the hypermobility clinic - go private if you can afford it.

Best wishes for your journey

[happytulip in reply to Hidden]

My first thoughts were EDS and POTs too. Since starting meds for POTS my life has improved.

[Kajarvie1985]

Hello,

I am also 32 and currently in the fairly early stages of diagnosis process. Bit of my background:

It's been a long journey for me and I've had significant health problems for the past 11years with things getting much worse over the past 6months.

I have now been diagnosed with Joint hypermobility syndrome and am planning on investigating whether I actually meet the criteria of hypermobile EDS.

I am also about to start investigation process for potential PoTS. I also have quite severe frequent migraine type headaches which I've recently discovered actually are relieved by lying flat so also am going to raise the possibility of investigating whether I have a spontaneous CSF leak, something that can also be associated with EDS (I have recently learnt about this and a lot of my symptoms would fit )

I have felt like a hypochondriac in the past and kept quiet about a lot of symptoms for a long time. I have also had periods of depression which were probably triggered by my other health issues but thankfully we're helped by a combination of medication and psychological support. My mental health is now actually really good despite my physical health being rubbish. With support I have learnt ways of keeping my mental health in check.

The reason I'm telling you all this is I was where you are for a number of years and just 'got on' with lots of things that were impacting my life but not in a huge way. I really regret this now. I wish I had had answers sooner.

I have now been forced into searching for answers and it's hard work but I'm determined.

Personally I would encourage you to raise the questions with your GP. There is no harm in it being properly looked into. If it does turn out that you have EDS or hypermobile joint syndrome then it'll be easier to get support with a diagnosis. It will also let you know what's going on.

I am about to start physio, my joints are much less stiff since I started regular painkillers and I'm waiting to see orthotics to help support my flat feet. This is just from the hypermobile diagnosis.

Another benefit of a diagnosis is that it'll help consider/screen for other problems that can be realted to EDS that may not have been considered.

My understanding is that finding a specialist who has enough knowledge to accurately diagnoses EDS can be a struggle but I think it's a struggle worth going through.

I chanced upon a rheumatologist who diagnosed my hypermobility (I was actually seeing him as there was a question over whether I might have Lupus... I don't). I am planning on asking my GP to write back to him and ask about whether he would be able to rule in or out elherdanlos and if not if he could recommend someone who can.

Don't be afraid to ask for second opinions. you are always entitled to a second opinion.

Good luck xx

[andreasuperstar]

Hi there, I had many symptoms suggestive of EDS however I have just been diagnosed with Hypermobility Spectrum Disorder. I have a horrifying list of symptoms. Prior to this I had been diagnosed with fibromyalgia. My journey has been a long one and I have been left feeling like I was losing my mind. For me a correct diagnosis offered validation and credibility for those symptoms I had been reporting for many years. Unfortunately, this is such a specialised area and for whatever reason, hypermobility is overlooked. In my case it was disregarded by GP's, Consultant Rheumatologists, neurologists, physios and although it was noted by an Occupational Therapist, she didn't say or do anything about it. Many of us have had to pay privately and invariably the best starting place may be the Hypermobility Unit in London or by contacting HMSA. I did not rush into either option. I spent time researching, listing symptoms, speaking to members on here and the fibro forum, I saw an osteopath - who also commented on my hypermobility and finally, there seemed more to include the diagnosis rather than exclude it and I felt it was worthy of being explored. I printed off an EDS/hEDS list of symptoms and started to highlight symptoms I had/thought I may have. I did a family timeline (this was very difficult as many of my family are all over the world, didn't want to share anything, didn't feel it was relevant or read any of the information I sent them and worse, many of them just used it as an opportunity to make jokes about it at my expense). The lack of family assistance was un-helpful to say the least but I had to carry on regardless. Do your research, accept that your GP and rheumataologist may not have the specialist knowledge you need and do not give up! There were times when I could have given up, but my daughter is affected and that pushed me forwards along with the support of Tillyray (member on here). There is lots of great advice on here, many members have been down this path before you.

[Charliebear68]

Hello my lovely,

Please go back to your GP and don't be fobbed off with depression. We all get depressed because we feel like we aren't being heard and is a massive part of many auto immune - very frustrating!! Let me know how you get on or if you need anything. It's taken me 10 years to get diagnosed - I have UCTD and fibromyalgia and am quite bendy!! - so be patient chick! But you've found this forum and there will always be someone around to help steer you in the right direction.

Charliebear xx

[Laurakins in reply to Charliebear68]

Thank you that is kind xx

[Charliebear68 in reply to Laurakins]

I've been there chick and it can be scary. It can also be very lonely. Even close family and friends don't understand. Being made to feel like it's "all in your head" makes me so cross. It isn't in your head and you aren't a hypochondriac. Go with your gut instinct. Have you done the Beighton score? Mine's 5 but my rheumy is taking 1 step at a time. My GP is awful and I had to go private but even that took 2 attempts - 2nd rheumy is fab.

Keep going, have faith in your own instinct and don't be fobbed off!

C xx