newly diagnosed

[Rfplym]

Have just been diagnosed with eds type 3 at the age of 50. My gp said that she didnt see the point in referring me for further help as "there's nothing they can do anyway". I wondered if anyone else had to deal with what to me seems a very unhelpful attitude?

[EOLHPC]

Hello Rf...yes, I guess it's fair to say that although all my consultants acknowledge my vascular version of EDS is significantly involved in my multisystem conditions, they tend to be actively monitoring & treating my systemic lupus & immune dysfunction-related secondary conditions rather than the EDS.

Lucky for me all my multisystem treatment plans really do help me...I'm 62 and my diagnosis of infant onset lupus got lost until 2011, by which time multisystem debilitation had become widespread, cumulative damage was done, and several autoimmune conditions had been diagnosed (these turned out to be secondaries to the SLE). Meanwhile the Dysautonomia that accompanies my EDS & SLE had also been recognised, and was being taken into account during ops etc.

Mostly I've concentrated on lifestyle management of my EDS...which my medics encourage...and which helps me a lot. As I've aged, I've found that associations like EDS UK + experienced physios +some ortho surgeons (eg those with expertise in CRPS (complex regional pain syndrome) help me the most...but for sure my combined therapy daily lupus meds help a lot with my version of Dysautonomia....and for certain it's ultra helpful that my medics are all careful to avoid prescribing meds that can aggravate the dysautonomia

It's just too bad that it's taken the recovery of my lupus diagnosis for all these medics to take me this seriously. My feeling is that without my SLE-related debilitation & secondaries, I'd be encountering more unhelpful attitudes

It'll be interesting to read the replies as the come in...I very much hope you manage to get more support from the health system! Maybe see a different GP? I had to shop around before I finally found one who works hard on my behalf

Thanks for posting

🍀🍀🍀🍀 coco

[TigerTea]

Welcome to the group 🤗 I don't post very often but watch & read posts as there are a lot of lovely supportive people on here 😍. Who diagnosed you? I was diagnosed after a lot of tests at the Autonomic Unit @ Queens Square UCLH, & believe it depends on what type & how it impacts on your life as to what might 'interventions' could help you, e.g I have 'internal' hypermobility, hernias, prolapses etc so it's a general 'fix what occurs' senario, but it can affect your gut too so i'm being investigated for that. I would want an 'expert' diagnosis from somewhere like Queens Square (Prof Ingle & team 🙂) and know they would 'have my back' as far as what would help my symptoms.

Best wishes Tricia 😘

[LoopyLou72]

It's a very unhelpful attitude but overall they're not far wrong. It depends on how affected you are and if anything it's worth being referred to physio to see if they can help. It's generally a Rheumatologist that diagnoses, as opposed to a GP, so if you've not been referred then put your foot down and make sure you are.

I had an onward referral to orthotics for instance, having walked over on shoes since childhood, but I was 40 when diagnosed but last year was the first time I saw a rheumatologist in a clinic and he went through every check necessary. He did at that point discharge me but I'm now back under the specialist Rheumy nurse as I've deteriorated beyond the point of help.

Physio was doing more damage than good and after exhausting every single therapy, alongside medications not working, there is little they can do for me and I was told last month they expect that I'll be wheelchair bound within 5 years. I'm 43 now.

Sorry for going off topic but you will need to be assertive and if you can't get what you feel you need then see a different GP in the practice until someone makes the necessary referrals.

I hope you get somewhere and find some relief for the future.

Xx

[kallie21]

WOW! that is seriously unhelpful, sorry you had to deal with that. I can identify with where you are coming from, and honestly it is beyond frustrating. I have been on a rollercoaster ride with being taken seriously having the same type of EDS as you have. I feel your pain....in more ways than one

I went back and forth to G.P for years saying my knees hurt, I had pain in my shins or my feet, and the doc said to me try swimming or yoga. Then I started to have pain in my stomach, at the time I was 22 years old when I started noticing problems, and was not taken seriously. By 25 years old, after paying for a gastroscopy privately it identified that I had peptic ulcers. So then finally my G.P referred me for other tests. And they further identified I had a hiatus hernia that needed surgery to be repaired. (Which is one of the problems with being hypermobile). 1 Year after going to my check up with the specialist for my stomach, the lady asked me to bend my fingers, could I touch the ground with both hands.... and I was 9/9 on the beighton score. They sent a letter to my G.P recommending I was seen for hypermobility diagnosis. Back and forth I went to different hospitals for years before I got a diagnosis through tissue samples. I changed G.P's and asked to be seen by a physio for knee pain. I started seeing a physio who was the most unsympathetic woman I have ever met. I went for knee pain and after all the sessions that NHS offered (6) she discharged me saying 'I can't cure you'. 3 weeks (honestly 3 weeks after being discharged) I had a fall. I went to A&E by ambulance as I couldn't stand or walk. 2 months later I am still bedridden. My right knee has a lateral meniscal tear, an anterior cruciate ligament tear, and retropatella cartilage loss. My left knee also has an anterior cruciate ligament tear. The retropatella cartilage loss was almost certainly there before I had my fall. But now I am in position where they want me to go back to physio to see if I can avoid surgery...I don't see how it would. I am now 33 years old and have to contemplate another debilitating surgery with a lengthy recovery time having both knees operated on.

Please don't give up. Find another G.P or someone else in the practice who has some level of understanding of your daily struggles. There is always something that can be done, and you deserve that. I wish you all the very best. xxx