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Ehlers-Danlos Support UK
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Is it Worth Seeking Help?

Hello I’m new here!

Recently I’ve become more aware of EDS and realised I relate to it a lot (hEDS). Ive had xrays and blood tests which didn’t show much and my doctors have not carried anything on.

I’m wondering if it’s worth going to the doctors again (practically my second home at this point) so I could hopefully get help this time around or at least a diagnosis? Thoughts and advice appreciated - questions welcomed 😊

(Extra info: I’ve had chronic pain and fatigue for as long as I can remember. Some days I don’t move from bed without crying and when I do I am completely exhausted and will probably need to sit down within 20 mins. I’m currently weaning off Setraline to be put on Venlafuxine - which has been linked to relieving chronic pain too. Is it worth waiting to see if my new meds work first maybe?

I’m 19 years old - healthy weight - 5”6)

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Hello. Sorry to hear you are having such struggles. It is hard to persevere when you don't feel heard. But you definitely should keep trying to get to the bottom of your difficulties. When you see the GP, maybe take a list of all your different symptoms, make sure you let them know that there are days when you can't function. I have found it helps to take someone with me if possible. They are an extra pair of ears, and can help remind you what you need to ask as well as sometimes acting as a witness if you are not happy with the professional you are seeing. Have a look at info. on the net about hypermobility and EDS so that you are prepared for the appointment. Even if they can't give you a diagnosis, ask them what else might help you, and whether you need a referral to someone who can - e.g. rheumatologist. I hope things improve for you soon.

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Thanks so much for replying!

Generally, my GPs are great and within a few months I’ve had xrays on both knees as well as my whole spine, and various blood tests. The last interaction was over the phone with (assumingly) a receptionist where they told me my blood results were ok and so nothing continued. I often feel like I’m overreacting or not worthy of help so I think I needed other people’s thoughts on this!!

One recent appointment I arrived with a sheet full of symptoms and anecdotes and my GP confirmed I was hypermobile and suggested referring me to a rheumatologist- but firstly I had said blood tests.

I feel like I’m annoying the doctors so much because I’m there so often because of medication changes etc ah!!!

Again, thank you so much for the reply 😊

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I did that for 20yrs,tests would show nothing so I battled on. In the end I found a gp who actually sent me for various referrals, strangely the rheumatologist one was rejected by NHS clearance. However one of the doctors suggested eds and I saw someone privately and low and behold was diagnosed. Now I get the right help, my husband is more supportive and I understand how to help myself. I also had an echocardiogram which is important to check for complications. It is worth persuing. Even at 55 it isn't too late, but I wish I had known earlier, I might have been able to prevent some deterioration and it wouldn't be so hard to try to gain muscle mass. Good luck, you are too young to be battling like this x

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My GP who I have seen a few times agreed that I was hypermobile and that hEDS was a possibility so perhaps I will book in to see her becsuse she seemed really understanding

I’ve only recently started taking my pain serious - before that I had always put my pains and aches due to playing football but I’ve not played for approx a year now and this is the most pain I’ve been in probably!!

Thank you so much for your reply and I hope you are doing well X

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Hi, I have EDS and waited a long time for a diagnosis. I actually got a flippant diagnosis while being seen by a consultant rheumatologist when I had osteoporosis at the age of 30. After tests, he simply told me that I had it, and looked shocked that I didn't already know. I've had a more thorough diagnosis since then. The diagnosis didn't really change anything. I have see the pain clinic for years and see a pain psychologist still. I wear Butrans pain patches constantly which have been increased over the years. I also take morphine and other pain relief medication. I also have severe gastroparesis as a result of the EDS, and have a PEG tube from my stomach and I cannot eat solids and liuve on special liquid food - no fun - as I am only 30 kg due to to the pain. I had had physio over the years but I am not an immobile person - keep moving is my advice. It is hard to cope with chronic pain so the pain clinic may help with psychiatric help like pacing, but as for everything else you just need a good GP to help me aquire reasonable pain meds. If you can't work, a diagnosis may be useful in order to get certain benefits. I hope this helps?

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For me, I have always had bad joint pain but I’ve put it down to playing football however I stopped last year and my pain is definitely not getting better. Like I can barely carry a plate of food bcos my wrists are so weak and painful etc.

That’s true! I tell myself I need to start even going for walks frequently because I know I get worse when I don’t move but it is just difficult! I’ve always been so sporty and athletic it sucks that I even struggle sometimes to walk now

This was some really useful advice. Thank you so much for your reply and I hope you are doing well X

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Hi Mmmmcp,

As a fellow EDSer and have a 19 yr old daughter who sadly is much worse than I ever was at her age, I truly feel for you!

I have found like most all of us, it's about finding doctors who are knowledgeable with your symptoms and EDS in general. I actually had a Neurologist say that EDS only involves the joints and I was waiting his time.

As advised by others on this forum I'm seeking advice for both of us with Dr Hakim who practiced in London. It's £300 first visit. I haven't been but I've heard great things.

Sometimes when we know what's wrong with us we cope much better and stop worrying about "is this just in my head" "should I just get on with it" Knoweldge is power, power over our own worries.

Make sure you keep a diary and include previous issues as well. And I agree with others take someone with you because you don't remember everything.

I wish you all the very best! You are worthy of any doctors time! 🌻🌅

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That’s true! A lot of people have no idea about EDS so it was really great when my one GP knew it straight away and didn’t need to check up on the details about it so im hoping to go back to her in the near future!

Thank you so much for your reply! I hope you and your daughter are doing well 💫

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