Hi Everyone! Is it worth looking for a diagnosis??

[Lonnygirl]

Hi everyone,

From my research I really feel like I have HMS. I have had pain in my ankle, lower back, hips and neck for years and now in my shoulder, elbow and wrist as well. Whenever I have been to the doctor previously I have been told to take pain killers which don't work so when I had various flare ups I went to a chiropractor and then an osteopath. Both appeared to work but didn't give me answers about my pain! So this time when I had a flare up with nerve pain from my neck the whole way down my arm and into my fingers I decided to go to a physio. Everything the physio did seemed to make me worse however he did mention hypermobility syndrome to me which is what lead me here! My GP spent 3 minutes precisely with me and told me to come back for blood tests which showed nothing so he said he didn't need to see me again!

Anyway I will stop waffling on (I am very good at it) and just say the pain is affecting my life now and I am scared about the future and having children as I get so tired and sore after short period of activity. From my research I fulfil the criteria for HMS, Beighton score of 5, (although my physio tells me my elbows are also hypermobile which I didn't realise! which would make my score 7!).

My question is whether to bother going through all the hassle of trying to get a diagnosis? will it actually do anything for me other than give me a reason for my pain! If so who do I need to be referred to! I will be seeing my GP again this week!

I also want to thank everybody for the HMS website and forum as finding it has really helped me as I was beginning to think myself that I am a hypochondriac!

Thanks

Lonnygirl

[Rosie]

Hi Lonnygirl

and welcome to the forum.

is it worth looking for a diagnosis? hard one, and probably different answers for different people. There can be advantages to getting a diagnosis, like getting appropriate treatment. Sometimes consultant can make referrals that GPs can't, and if you see one of the HMS/EDS specialists they can reccommend actions for your GP, and ensure that you receive the correct diagnosis. The specialists know what to look for and may pick up on symptoms that you are your doc may not recognise as part of HMS/EDS.
But it is an individual decision, and it is up to you.

Rosie

[Ems_85]

Hi and Welcome!

I think Rosie is right in that it's down to the individual when it comes to trying to get a diagnosis.

I have found that it has helped me in some ways but not been such a good thing in others.

Finding this site has to be one of the major benefits of my diagnosis, I would never have known about it otherwise but it seems like you are ahead of me on that one! Another big thing for me was feeling confident that there was a reason for my pain and in feeling justified when explaining it to others. Saying "I have" rather than "I think I have" was a turning point for me. I think a lot of that is down to the fact that I was going through counselling at the time and was (still am at times) hugely lacking confidence. I think knowing what causes my pain (as best as we can know) has also helped me to manage it more easily too. Without that diagnosis I would probably have kept on wondering if it could be something else that caused the pain and I'm pretty sure I would have kept on doing exercises that were no good for me in the hope that I would one day see an improvement!

On the down side, It has frustrated me so much!!! Every GP and physio I've seen so far has told me different things. All seem to know that I have HMS but non seem to believe that it is anything to bother about. It does make me angry and upset at times. Because of this I've decided not to push for a diagnosis on related issues. I am becoming more certain each day that I have fibro but don't need a GP to tell me this now. If I have it I do, if not I don't but it won't change the symptoms or how I manage them.

I think what I'm trying to say is that its not only up to you as a person but where you are in your life at the moment and what you feel you will achieve by getting/not getting a diagnosis.

Oh...and don't worry, not everyone babbles as much as I do!

[nemonie]

Hi,

Further to the advice you have already received it is up to you really, but having a definitive diagnosis can open up treatment pathways and enable you to access proper pain medication and pain clinics (hopefully ).

The best way to do this is by asking for a referral to one of the hypermobility clinics http://www.hypermobility.org/clinics.php

If you can afford to go privately, Prof Grahame sees patients at St John's and St Elizabeth's in London 2 days a week.
This thread discusses this http://www.hypermobility.org/forum/viewtopic.php?f=3&t=4433&start=75
The waiting time is much shorter for private appointments.

[Lonnygirl]

Thanks everyone for the welcome and advice.

Went to see the physio again today who advised me (again) to look for a referral through my GP. I went to a different GP as well today who was lovely and didn't look at me as if I was crazy. She said I need a referral to a Rheumatologist however she needed a further blood test first to look for Rheumatoid factor first. I have another appointment in a week. So much better than the usual 'go away and take pain killers!' She even asked me did over the counter painkillers help and did not look confused when I said no!!! .

Like you Ems_85 I think it might be worth me being able to say conclusively that there is something wrong and I am not just being whiney and lazy! even my work colleagues seem to think I am mad (and I work in healthcare). I have pain most days but I can usually pace myself so this doesn't become unbearable too frequently. this means that nobody (except my very supportive fiancée) sees me in a state!

Thanks everyone

[Rosie]

Hi Lonny

It is usual to have a blood test to look for RA and other stuff, before being referred to a rhuematologist. Fingers crossed you get to see a rhuemie who recognises and understands EDS/HMS, not all of them do. HAve a look at some of the threads about what to expect when you see a rhuemie,, and how you can prepare yourself.

Rosie

[Lonnygirl]

Thanks Rosie,

So glad just to have even one doctor think I am making some sense!

This website is also great for helping me realise I am not just crazy!!!

Thanks everyone

[Faethe]

Hi
I'm a newbie on this board and in this position too. I've got an appointment with my doctor tomorrow and the secretary has told me my blood test results are normal. Now I know that I don't have rheumatoid factor in my blood and whatever else it was they tested at the same time is also fine, I'm even more convinced that what I have is HMS. I have a beighton score of 7 (everything except the elbows) and 3 of the minor criteria on the Brighton score.

At the moment my pain is only really in my knees and sometimes in my hips. I've adjusted my lifestyle pretty well and can mostly do what I want. If I have this condition then it seems like a good idea to get it diagnosed but as far as I'm aware the doctors can't really do anything to help so are there any drawbacks to diagnosis that I should be aware of before I push on with this?

Thanks everyone for being here on this site. It helps to feel I'm not alone with this.
Ellie

[evenwen]

My personal opinion is to go for a diagnosis. I've heard a lot of the term "labelling" being bandied around over the last couple of years, but to me it is a completely different thing! It also smacks of "we'd rather not spend the money on you"

If you have HEDS then a lot of symptoms for various seemingly unconnected ailments boil down to that. They can be treated differently and should be. From physio to gastric complaints through to palpitations/"anxiety"- all now, for me, make sense so are less frightening and as a bonus I can tell when someone just needs to be given info from this site or I need to get out of their hands ASAP because they don't know what they are doing. I'm not taking half the stuff I was prescribed in the past when things weren't clear (just the drugs for reynauds alone were ghastly and ineffective).

I might not get the treatment I've been told I need, but at least I know I'm not mad and don't need to be dosed up on antidepressants. It is highly validating to be able to look someone in the eyes and tell them what it is you have. Whether they have the brains or empathy to understand you or not, the confidence boost weighs out the frustration

Only way I can think it would be a bad thing is if you are wanting private medical insurance so need to hide a complaint...

[Jjude]

I had never heard of hypermobility syndrome until i was diagnosed. Before that, I really didn't know what was happening, with the symptoms being similar to many other more scary complaints, i was insistent that they found out what was going on. Not because I needed a name, you understand, but because I wanted treatment to make me better. I knew that my ailments were not "in my head". I too had nothing show up in my blood at all.

The diagnosis was a relief, and though there is no magic cure, doctors are now more helpful with managing my pain, and I have had some good advice regarding physiotherapy. So although I won't get better overnight, I feel better about it. Although this condition can be limiting, its good to know that what "it is" and you need to know so that physio is offered to suit you-my physiotherapist was very clear about what I can and cant do, and that my whole body needs reconditioning. You need a diagnosis to ensure you get the best support and treatment for you.

[anna]

I'm definitely of the opinion that it is better to have a diagnosis - unless you are a person that this would worry more than not knowing (they do exist, I know one!). For me it was a huge relief to be diagnosed, if rather late, since i had already had a situation where I logically knew what was wrong (a serious womans complaint) yet it took nearly two decades and a very skilled surgeon to prove I was right and sort it! So to be diagnosed was a relief since it explained so many physical conditions for me. I had never even heard of eds/hms until the day before I was diagnosed and then only because i saw a leaflet on a wall. I remember thinking 'Oh that won't be me' and not bothering to read it!! Then the next day I was diagnosed. There are a few people in this world ( we had one in our family) who get worried reading about their condition, so I would suggest that you read this forum and other similar ones in small doses, so you don't get overwhelmed. I believe there is a statement on the front page saying that hms affects us all differently, and that is RIGHT! So just because ms x has one related symptom or illness, doesn't mean you will have. Anyway, that's my rant for the night and I wish you luck with any decisions you make about all this.

[Faethe]

Thanks everyone. I eneded up seeing a different dooctor at my surgery and he was really unhelpful. He asked me if it could possibly be in my head as he couldn't understand why physio in the knee class a year ago didn't fix my pain.
He has referred me to rheumatology though, and it's through the choose and book system so I'll see where that gets me. Anyone want to reccomend a good rheumatologist in Coventry or Birmingham that I can access through NHS choose and book?

There is a part of me that would rather leave this undiagnosed instead of having to accept this scary diagnosis but I think the biggest part of me wants to know what is wrong even if all that means is that I can tell people 'I have HMS, that's why I have to....' instead of 'my knees/hips hurt and everyone thinks I'm being a wuss but I can't...'

[Nelly]

I wrote this once, but ended up loosing it all.. Nooooooooo, lol. Take 2.

I had a sim experience once when I had apendicitus, was ultra sick and when gp eventually decided to refer me it was with a letter to hospital staff basically saying to humor me and that they did not think I was that sick at all, went into surgery that night, lol. It hurts when they don't believe you, sorry to hear you went thru such a horrible thing.

I hope you get a diagnosis wether it turns out to be hms or something different. What you can do without one is the same as what you can do with; fight, move forward, not become to engrosed that you forget to live and try carve out some laughter amongst the tears, stress and pain.

I wish you every success in finding your rheumatologist and your diognosis

[Lonnygirl]

Hey everyone,

Thanks for the messages. I have a rheumy appointment this week and may or may not get a diagnosis.. I am beginning to doubt myself!!!

Really good to know everyone here is so supportive though and I am not being told to just deal with it!

Thanks!

[Superstottie]

Good luck with your appointment - I got into the self doubt thing a few days before my appointment too - keep positive and hope you get a good Rhuemy!! x x