Ehlers-Danlos Support UK
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Hello, new and advice needed pls!

Hi everyone, I’m new to this forum. I’ve been having all sorts of widespread pain problems and getting nowhere with GP, they have me pegged as a hypochondriac.

Recently I’ve had several appointments with an osteopath due to terrible neck/jaw and shoulder pain. Within 10 minutes he said I think you need to be assessed for ehlers danlos! I’ve always suspected I’m hypermobile, I’ve very flexible and every single joint clicks and crunches. My son has spinal problems and has been diagnosed hypermobile by a physio so I guess it’s definitely possible. I went to GP last week and she snorted at me and told me to double my sertraline dose!!! I’ve only been taking sertraline for anxiety due to 8 months of pain, exhaustion and digestive problems with no answers despite CT scan, gastroscopy and endoscopy. This all started after terrible food poisoning last summer which I believe has triggered a flare of something. Still waiting autoimmune profile blood results. Already diagnosed hypothyroid, Hashimotos.

Can anyone advise me what to do next? I’m going to try GP again this week, what tests should I request re ED? Should I ask for rheumatology appt or Neuro? I will admit it’s really getting me down.

Sorry it’s so long and thanks so much if you got to the end of this!!! Becky

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For most forms of EDS there is no blood test, it is just a clinical observation. you could try to take in this paper for them:

alanspanosmd.com/wp-content...

We should be getting a Toolkit from the Royal Collage of GPs soon, but they haven't published it yet so this will have to do.

Unless you have the criteria for one of the more rare forms of EDS where they know what the underlying genetic cause is, it will be difficult to get to a geneticist, and if you do, they don't treat as such, they just diagnose.

In many areas the people that do the diagnosis are rheumatology but not all of them are familiar enough with EDS. Could you connect up with others with EDS in your area to find out what the best pathway is to diagnoses?

One way you could handle this is to go to the GP and say that you have been informally diagnosed by an osteopath and your son by a physio, so if the GP doesn't think you have it would they like to refer you so that it can be definitely eliminated from the picture and you can get to the bottom of what is really causing the pain. Maybe if they think they will be proven right by a referral they might be more likely to do it.

On the other hand you could just carry on with finding a really good physio rather than going for a formal diagnoses. Carry on as if you have the diagnoses, and see what happens. Eventually the evidence from the physio will filter through and the GP won't be able to deny it.

Alternatively, find a new GP!

Good luck!

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Thank you so much, that’s really helpful! I suppose if there isn’t a specific treatment then maybe an official diagnosis isn’t important. She did suggest amitriptyline if more sertraline doesn’t help so will try that to see if it helps with pain. I’m going to look into support groups too.

Thanks again for taking the time to reply x

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First of all there is something called Number To Treat (NNT) for drugs. It is the number of people that have to take a drug for one person to get benefit from that drug. The NNT for sertraline was 10,which means that for every 10 people taking it only one person will get any benefit.

It sounds like you would benefit more from pain control than anxiety control, especially if you are one of the people for whom sertrailine doesn't work well. And that might mean that Amitriptyline would be better. The NNT for that is much lower, more like 4. And at low doses it is very good at controlling certain types of pain. in fact they found that it works better at low doses for pain relief than it ever did at higher doses for depression!

So it sounds like that would be a good idea to have a go with. Make sure that they start you on a low dose and only build up if you need to. My son was on a low dose for a couple of years before we upped it by a tiny amount. It can take a week or two to adapt, so don't give up on it straight away if it makes you feel more tired rather than less.

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It definitely sounds like the way forward. I only ended up on sertraline because it’s been so long with pain and no answers, that and lack of sleep does make me tearful on occasion and the relentless googling for answers only creates anxiety. Apparently there’s an interaction so I can’t take both drugs together but I’m quite happy to switch, I’m convinced with pain control my mood would be entirely different!

There’s clearly no substitute for real peoples experience and kind advice, no more Dr Google for me. Thanks so much.

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