Haven't been diagnosed hEDS yet but...

[LaurenBurton]

When I walk up the stairs, I have to take micro breaks because my legs feel like I've done a 5k. Doing minimal things makes my energy level plummet so badly. Even showering and doing my makeup means I need a break afterwards. I wish I had a blue badge because sometimes my ankles feel like they will break at any moment and my legs feel strained. Plus carrying shopping bags for too long (by that I mean across a car park) means multiple shoulder or hand swaps. I wouldn't even use the blue badge all of the time, just when I needed, I'd feel too guilty otherwise. I feel like an idiot for using a trolley for only a few groceries because I have to buy milk or juice or something else heavy and I can't carry it around in the basket for too long. I'm just tired and weak all of the time. This year my symptoms have worsened significantly and I just turned 21. I'm visiting a rheumatologist next month and I hope I can get answers and a plan in place to help me live better.

People call me miserable and tell me to cheer up all the time. And I think I figured out why. When a "normal" pain free person gets a toothache, aren't they the most miserable bitches ever? When all of your energy goes to fighting pain and you're constantly dealing with pain, it makes you not fun anymore. At least in my experience. Also my IBS woke me up at 1:30am so that's great

[Tillyray]

Hi Laura. I am so sorry to hear you're struggling, I know just how hard it is... At least your hypermobility has been recognised which can be a first step towards an actual diagnosis if you have other symptoms and traits that fit...You should look on the HMSA website.

It is important to remember that a general rheumatologist is unable to diagnose EDS which is an hereditary condition, and this is made by a specialist in Hypermobility, EDS. Or by a genetics centre if it is any EDS condition other than hEDS. Hypermobility ehlers danlos syndrome -hEDS- has no test and is diagnosed by an actual specialist rheumatologist, as is Hypermobility spectrum disorder.

It can be a long road to a diagnosis as Doctors are unfamiliar with it, and so you have to do your own research and become educated. You have to request to be referred by your GP,to a specialist rheumatologist - ask the HMSA or EDS UK for recommendations- and you also have to be prepared to travel to see them as they may be out of your area...

With pain as a problem, hopefully you will soon get some pain relief for this -although with this it isn't always easy I'm afraid- I find hot and cold is a temporary help for me. I have an 'Actipatch' for muscle pain -trapezius, neck pains- sold in Boots. Also prescribed medication. Nothing other than 'strapping', supports my painful joints - and this is far from ideal- but it is a learning process in finding what works for you, and doing things differently.. I am in the early process of receiving nhs treatment for my various symptoms... I initially got my hEDS diagnosed privately.

My memory with applying for a blue badge, is either proving you are already in receipt of disability benefit or getting your GP to confirm your disability/ illness which needs a blue badge.The form can be filled in online.Type in blue badge.

Good luck and best wishes xx

[Jay66]

You are battling against pain and fatigue and you cannot be compared to other pain-free people, whether you have a diagnosis or not.

I always use a trolley and often wish I had a blue badge, but I am a lot older than you, and people my age are developing arthritis and so on, so I don't stand out.

My pain first appeared when I was 22, and only gradually developed into its full life-changing, energy-sapping awfulness between about 28 and 47, when I finally got diagnosed. The diagnosis will help when you need to educate your friends and family, but it may not be easy to get now.

For a lot of my 30s and 40s, I was a pretty miserable and negative little soul, trying hard to do all the things a full-time worker and mum should be able to do, and failing all the time. You have the chance to be realistic about your expectations - don't be hard on yourself. Good luck with the rheum. but as Tillyray says, the rheum probably won't be able to diagnose hEDS, and they are unlikely to get involved because you won't show any damage to the joints internally.