Rheumatologist referral, appointments, reports etc

[ladybirdscot]

Hi Fini,

I hope you don't mind me replying to your post. I know it was more addressed to Lainey but I relate to so much of what you said that I felt compelled to reply.

I totally understand when you say 'how do you cope at uni?'. I, too, have no work to go to and even my daughter is 14 and more able to help me than I am to help her. You feel useless don't you? I know I do.

I live in a really rural area (lousy bus service)m and have a friend who lives in Aberdeen. By the time I have travelled to Aberdeen (2 and 3/4 hours), I am not fit to climb the one flight of stairs to his flat. Therefore, we keep in touch by phone because he is a genuine friend. Several other friends have fallen by the wayside because I can't 'do my bit' visiting wise. I don't have a problem with that though as I know it is the natural process when one gets to my age.

I'm waffling (I'm like that!) but all I wanted to say was that, contrary to your beliefs, you are not alone, even on this site.

I went from 'dancer to cripple' in a year and from 'running my own business to unable to walk, never mind run' in 8 years so you have my understanding when you wonder if everybody else is coping better than you.

If I've interpreted you wrong, please forgive me.

xxx

[leashy11]

Ladybirdscot, everything you just said could have been written by me! I live in a rural area too with very little there (not even a shop now thanks to the recession ) and some of my friends have fallen by the wayside because of my lack of visiting. I also keep in touch with the friends I still have by phone and email etc. Ditto no work, ditto definitely no running!! I've gone from being a really determined and career minded person to being a physical disaster in 6 years. So Fini I think you've got alot of company with people who aren't coping very well! We need an instant messaging kind of thing on here don't we so we can all chat!!

[nemonie]

Hi Fini,

I just wanted to clarify an issue the rheumy had said, about HMS being really common and 1 in 10 people having it. This is not true and she obviously hasn't read up on it recently. Hypermobility as measured on the Beighton has been found through various studies to occur in about 1 in 10 people in the UK. Likewise another 1-2 in 10 will be abnormally stiff in the whole spectrum from bendy to normal to stiff. This "1 in 10" relates only to flexibility. Actually suffering from the syndrome is less common than this. If it really was suffered by 1 in 10 people I imagine there would be much better recognition and management. Have a look on the main HMSA site for more info.

Nemonie

[AnnaH]

Mod edit - quote of previous post removed. Please only use quoting when it is needed to clarify your own post.
My consultant told me that whilst many people were hypermobile (including numerous members of my family), most of them do not go on to develop hypermobility syndrome. The syndrome means you have hypermobility, plus pain, plus joint problems, plus dislocations (or partial dislocations). It also includes fatigue and often muscle pain as well (fibromyalgia symptoms).

He also told me that although I'm not the most flexible in my family, just because you're really bendy doesn't mean you necessarily have problems - my grandfather was like rubberman even in his 90s, but had relatively few joint or pain problems except for his neck.

I in 10 people may be hypermobile but maybe 1 in 10 of them (probably less) have HMS. Problem is, HMS is horribly under-diagnosed so there are many people out there with labels like fibromyalgia, sero-negative arthritis or just considered accident-prone and hyperchondrical, who actually have HMS. I just wish more doctors knew about it so that people didn't have to go years without the right help or treatment - I have two permanently injured Achilles and may never walk properly again because my problems were not diagnosed correctly, and my consultant said he had had patients in their 50s who, due to multiple injuries over the years, are now severely disabled, who might not have been had they been diagnosed in their 20s. We really do need to get the message out there.

[elliejay]

So glad I read this thread.
I was diagnosed with hypermobility about 3 years ago and told there was nothing they could do. Since then I have been diagnosed with psoriatic arthritis even though I don't have psoriasis. After reading peoples experiences on this forum all my symtoms can be attributed to HMS. I am trying to get a second opinion from an HMS specialist.
I think I am in the category of being in my fifties and having damaged joints due to undiagnosed HMS.
I know there isn't a lot that can be done as the damage is already there but it would be good to have a proper diagnosis and not to have to take the meds for PA.
Ellie

[Shadowlady]

I know there isn't a lot that can be done as the damage is already there ...

Oh Ellie, knowing what the problem is, and getting good physio exercises and orthotics has completely changed my life! I had, without knowing it, underactive 'stabilising muscles' ... Yes it took ages, and yes I still have some stretched out ligaments and other damage, yes, I still get pain (much, much less though!), and yes I still have HMS... BUT - oh my goodness I feel so much better, I'm stronger and fitter, I got back to work, and built up my walking till I could walk for miles and miles, massively reduced my awful headaches and loads of other painful problems, I developed coping strategies to deal with all sorts of problems, I got better at explaining things to ... everyone. My orthotics help stop my ankles rolling about which helps my stability enormously... Yes, yes I still have problems, I recently injured my back, and there are always people who don't/won't understand, there will always be problems that I have to pick myself up from and figure out how to deal with. Simply knowing what's wrong though... Just knowing, makes everything SO much better, SO much less scary (once you've got over the shock and come to terms!), and I'm not alone, definitely not crazy or a hypochondriac, I have problems, but I have such reassuring company here, advice, support and understanding to help me every time I'm struggling. And most importantly for me - as I cope best by doing - there is a lot that can be done, both by myself and with help, there's so much to try and do that can help. So much!

I'm so sorry if I'm weirdly ranty ... but there's so much that can be done!!!

All the best,
S

[Spireite]

Yes elliejay, I agree with Shadowlady. Knowledge is power. Just quickly visiting inbetween going for a run and going out for my Sunday lunch, but there are things that can be done to improve your lot. Just have a read around this forum.

[elliejay]

Thankyou shadowlady and spireite for your replies
I really think I have made the right decision in asking for a second opinion.
I am convinced that I have HMS and not PA.
I am going to the residential weekend in September so hope to gain a lot more knowledge of what help is available. Look forward to meeting people with similar experiences.
Ellie

[Lainey]

Hi Lorna,

Hopefully your appointment will provide you with lots of information and you have a much better time than I did. I can sympathise on being left to get on with it. I felt like most of the doctors at my local surgery didn't really know what to do with me and rather than admit that, they just simply wrote me off. I asked to see the new doctor who had just started and she was amazing. I felt like she listened to everything I said and actually believed me! I am still currently trying to find appropriate pain relief but I am working with a doctor who is keen to find a solution for me which is great.

As for uni, I got my doctor to write a note explaining HMS and the consequences relating to that. I tend to be worse in the cold so during the Winter I am unable to attend uni most days. But that note covers all absences and means they can't disqualify me from exams for something I can't control. Uni has lifts so I tend to use those rather than the stairs. I go to Strathclyde Uni which is set on a hill but I have found alternative routes through buildings and lifts in order to avoid the hills! . My HMS came on rather suddenly too, I got a virus in October of 2008 and the painful joints just never went away and got gradually worse. I am sorry to hear you're not doing all that well and it must be incredibly difficult trying to look after your son.

I know exactly how you feel. When people ask why my joints keep popping and clicking, I reply I have HMS and I am met with blank stares. Its rather frustrating. Once you explain, they never seem to grasp just how bad it can get. That's why I love this forum, its like reading about my life in some respects and there's a whole load of people who understand exactly what you're going through.

As for my uni work, I tend to use a laptop which helps rather than writing. I just take my time writing essays and when my wrists start to ache, I strap them up and stop working for a bit. Just have a wee tea break! You don't sound like a moaner at all! Please don't worry about venting....this is probably the only place us bendy bods can vent! Do you work/study at the moment?

Ooooh acupuncture! I am looking into alternative therapies right now and fancied trying acupuncture. Did you find that it helped?

Hope you're feeling better and I apologise for another essay in reply! Hope it helps though!

Lainey

[AnnaH]

It is good to read other people's experiences.

I was diagnosed last week, by a consultant I went to see privately. My GP refused to refer me to anyone else, after accusing me of exaggerating my problems. I have damaged both Achilles permanently and walking is very painful. I also have damage to one hip, both hands and my arm is being affected due to my walking with sticks and frames. Due to the enforced immobility, I now have severe muscle loss and my balance and proprioception are shot. I have minor deformities in my fingers and toes and one big toe curls upwards, whilst one finger I can't straighten.

I can't trust the physios - they completely missed that I was hypermobile and many of the exercises they gave me are dangerous for me. They too just concentrated on telling me my pain was mostly in my head and because I was "unfit". I actually saw a mental health person, because everyone kept telling me it was in my head and she told me I was coping really well with an impossible situation and was horrified at the lack of sympathy I was receiving! Anyway, turns out it's not in my mind, its in my tendons. My consultant tells me I've done myself quite a bit of damage, unfortunately, and he has significantly increased my pain medication.

So now I want to rehabilitate. I wasn't very focussed before because no one knew what was wrong with me and the pain frightened me. I didn't know if I was doing myself any damage and I kind of gave up. But now I know its HMS and I know what is causing the pain, so hopefully I can make progress. Problem is, I feel like I need someone telling me what to do, like a proper rehab plan, but I don't know where to get one from. When I read general hypermobility stuff it talks about walking and swimming as exercises - I can't do either at the moment, and there's no hydrotherapy pool in my area. I'm starting from Ground Zero and when I move, I hurt myself because everything is so unstable. Where do I go from here?

[FIN1]

Hi Everyone

Thanks for all the responses. It's interesting to hear how everyone's problems started. I got acupuncture the other day and I think it does help even if it's for a short time. It's definitely worth a try. Physiotherapy never worked for me. I saw NHS physio for problem with my pelvis for a year but I think they made me worse pulling my leg and all sorts!

It's nice to chat to everyone on here as it can be lonely( as you all know) as you don't really have anyone to speak to who understands. Does anyone else in your families have this condition? I guess someone must have. I'm guessing it was my dad( he had terrible clicking joints and sore hands,jaw etc most his life). I don't think he even knows he has it.

It's funny Lainey that you mention you are worse in the cold because I thought that at christmas time last year. I remember going outside and my hands were so stiff within minutes. We'll need to get thermal gloves etc. Funnily enough I moved from Australia back here again before all this started! My husband and I emmigrated to Perth but we missed everyone too much and it was too warm so we ended up back here. I'm thinking now the heat may be a good thing for me!

speak soon, the little monkey is up.

Lorna

[Twinkling Star]

Dear LadyBird
Was pleased to see you here. My nearest hospital is Inverness and we share a lot of the consulatants from Aberdeen hospital. Hope we get the chance to speak really soon. I don't see anyone yet but I am hoping to see someone soon. Then maybe we can find out a bit more ab0out the services available up here.
Hugs Twinkingling Star

[elliejay]

Not good news today.
Saw Dr Jenkinson at Bath min hospital. Very pleasant and thorough. Had 10 xrays and sending me for MRI scans.
Says I do have HMS which is probably why I have ruptured ACLs and OA but that my knee problems are definitely due to inflammatory arthritis.
Not sure about my PA diagnosis but he said it doesn't make much difference what you call it and that my knees will only deteriorate if I don't take the DMARDs, so back on MTX. Says I will probably have to have more arthroscopies and maybe synvectomy (ugh!)
Still looking forward to September weekend.
Ellie

[Clare]

This is for AnnaH

Hi! Anna, whereabouts do you live? I am in Bradford and there is a really good HMS programme here, run by physios. If you are nearby, which I know is a long shot! then that might be useful.

Alternatively, you might be able to find a self-referral physio unit locally where the staff actually understand what you are trying to do. Try googling the local NHS centres for further advice.

Perhaps you could take your diagnosis, and some of the info from the HMSA website, to help you explain what you want to be able to do? Then if they don't particularly know about the condition yet but are willing to learn and help, you have given them the best chance of being any use.

Best Wishes

Clare

[juliea2]

I was diagnosed about 13yrs ago with HMS and was told there was nothing they could do. I ave been suffering loads of pain ever since aswell as subluxing joints. I am waiting 2 see a rheumatologist again this week I am so worried about going now.