Diagnosing JHS (HMS), EDS IV and Marfans

[Spireite]

'Heavy head' was the first sign of trouble for me, but when I complained to doctors about my heavy head, I was told there was no such thing and I meant lightheaded and my blood pressure was normal so I was obviously making everything up. I was left lying on the floor because I couldn't hold my head up.

Now with the benefit of years of hindsight, my neck ligaments are very lax, so my neck muscles have had to work to exhaustion to hold my head up. I'm much improved now, but I still prop my head up when I can, eg sitting in front of the computer, or to travel I need a head rest which rules out the local public transport.

But the head is relatively very heavy compared to the neck and its muscles. So it seems reasonable to me that if your neck ligaments are duff, then you will quickly develop a 'heavy head'.

[goddess]

hi,id really like some advice regarding a letter my second rheumatologist wrote to my dr this week.He told her that i have costochondritis,chest pain and palpitations.He's said i have inflammation of the lungs,feelings of pressure on the chest,and some airway issues.In regard to hms,hes said that i have aches and pains,worse after exercise,scored a 7 out of 9 on the beighnton score,and have moderate hypermobility.Hes said that there are no other symptoms to suggest a connective tissue disease.Yet in the next paragraph he says that 'she certainly has a benign hypermobility syndrome' that would give her more joint pains than would otherwise be expected.But he also thinks that because i have persistent hyperventilation (ie i breathe too fast and therefore lose too much carbon dioxide from my body),that this causes most of my symptoms.He thinks that my costochondritis persists because of my persistent hyperventilation syndrome.Hes recommended some blood tests,lung function tests and physio to get me to breathe more slowly.So the question is,do i have hms or not? does anyone of this make sense to anyone? and does anyone else have any of these problems? im so confused!
modnote: merged with existing diagnosis thread

[jax]

Hi Goddess,

I would think that is a diagnosis of Benign Joint Hypermobility Syndrome or HMS.

As far as I know, Asthma tends to run with hypermobility so that could be
a possibility too along with your costochondritus. My son has HMS and has asthma. I'm sure the tests will give you
more answers.

Best wishes
Jax
x

[dibley]

I agree with Jay. It does sound as if he diagnosed you with HMS. If you search around the sight using the search engine I'm sure that you'll find loads of info that will 'click' with your own symptoms. Hope the test results help you to get the right treatment.

Dibley

[goddess]

i really appreciate your replies,thankyou.When i went to see him,he said that he didnt think i had hms you see,but in his letter he seems to say i do,no wonder im confused! Im not sure if he will agree to refer me to a pain clinic or pain management course.But i know i need to do his recommendations first.I have looked up my symptoms on here,and to me,all the problems i have with my joints fit with an hms diagnosis.Im wondering why both rheumatologists ive seen seem reluctant to diagnose me as having hms!

[dibley]

They don't all understand HMS or even agree that it exists unfortunately. See how it goes with them and you might even find yourself educating them about it. Failing that change your specialist and find someone who does understand and believe what you're going through

Dibley

[Stone]

Looks to me like he diagnosed you with BJHMS = HMS.

Stone

[goddess]

Thanks stone.I went to see my dr again today,and he confirmed that i have a diagnosis of hms and costochodritis according to the specialist letter.Does this sound weird that i was actually HAPPY when the dr confirmed it?! Ive known ive had it for ages and was fed up with drs and specialists saying i dont etc.It was good to have my suspicions confirmed so at least i know i have SOMETHING,and am not making it up as some drs have thought! I am annoyed that the rheumatologist wrote in his letter that i have 'aches and pains' (referring to the hms),and 'occassionaly stabbing pains in my chest' (referring to the costo).As i feel that this massively underplays the fact that im in agony everyday! where can i find info on here about applying for disability benefit?

[Rosie]

Hi goddess

I used the expression 'validation' when I had my diagnosis, as in the diagnosis validates (or explains) the amount of problems and pain I was experiencing. A diagnosis of a specific condition also means that Drs should (Note should, not will) understand your condition and symptoms.

Rosie

[goddess]

Thanks Rosie.Im just annoyed that my gp and the two rheumatologists dont seem to know much about hms..

[Rosie]

Hi goddess

Unfortunately this is nothing new. The important thing is whether they are prepared to learn about it.

Rosie

[Stone]

where can i find info on here about applying for disability benefit?

Have a look in the Benefits section on here - lots of threads (depending on benefit) but many of us receive Disability Living Allowance, Employment Support Allowance or have a blue badge. Hopefully you'll find something of use there.

Stone

[TiffanySkladan]

Hi Everyone,

I went to my mother's GP (instead of mine b/c I thought he would say no) and he gave me the referral to the Hamilton Clinic. I will keep you posted when I get the date and let you know how it goes with the Dr.

[notsparklynow]

Hi all

I'm new here - just been diagnosed yesterday. Up until then I've not really heard of this condition.

A brief history - I'm 33, I'm a teacher and have 2 children. For the past year I've been suffering with joint pain. It began in my fingers and toes, but has since spread to my hands, wrists, elbows, shoulders and left hip. My GP had enough of me complaining about everything from constantly being tired (for several years), stomach problems and now this - so he referred me to a rheumatologist; and I went yesterday. He asked me a whole bunch of questions then examined me. Once he discovered I can bend my fingers at right angles to my hands he asked if i could touch the floor without bending my knees, then put my palms flat (which I can). He said then that I have hypermobility syndrome and that he'd send me a leaflet about it - in the meantime I was to look it up on the internet myself. He also said that I was to have blood tests and xrays to rule out anything else as it's possible to have this and something else too. So I had lots of blood taken, and xrays of my hands feet, lower back and chest. Then I go back in 4 weeks. I never knew that my degree of flexibility was unusual or potentially problematic, I just thought I was lucky!

In the meantime what do I do? From the reading i've done, i guess i'm quite lucky. my worst problem is the constant aches and pains and lack of sleep - but i've got used to the fact that i'm always tired and push through it as much as possible. Recently though, i've not been able to do all my work as marking books and using the computer for so many thinngs causes pain and spasms in my dominant hand. I'm worried that this will affect my job (my handwriting was slow and barely legible the other day because it hurt so much) and dont know what to do. The consultant didn't tell me. I'm also quite slow to get going in the morning (physically and mentally due to never getting a full night's sleep) and get really ratty if I hurt a lot. I'm glad I'm going back in a month - but what do I need to ask when I do? What should I request? Physio? OT? Am I entitled to a risk assessment or something at work so that I can attempt to do my job but not be told off for lack of paperwork if I'm in pain (or grumpy!)?

Also, is it true that this condition explains things like easy bruising and gastro-intestinal problems? I've always had these but they've never been explained. Looking back, I can see that I was hypermobile from birth - my feet were facing inwards when I was born and I had physio when I was about 6 or 7 to teach me how to walk in shoes properly because I was wrecking them and needed new ones every 6 weeks. I had to learn how to stand on my feet properly because my normal standing position is unnatural. (I still lock my knees out when I stand because I'm so used to it I can't stand "normally"!)

Yesterday I was relieved because up till then my husband was convinced I had lupus (i thought I was arthritic) but today I'm upset and angry. My mum has osteoarthritis and osteoporosis. In talking to her today, I discoverd that she clicks out her elbows to get the joints in the right position, which I do with my ankles, wrists and ribs. I can do it with my shoulders but rarely need to. Guess I know what my future holds!

Sorry for the very long post - I'm so delighted something like this forum exists because I really feel lost. Any advice on what I should / could do next would be great.

Thanks
modnote: moved into main Diagnosing JHS thread

[kayle_d]

Hi,

I also new on here, however I was diagnosed around my pre-teens, I'm now 20.

I personally didn't get on with physio in the long term, however I did find out from a physio that I don't walk properly as they think I overcompensate for my knees as I don't actually know when they are straight without looking at them. But every physio is different!!

From what I've read I think you are entitled to risk assessment, as it is a form of disability.

I am also suffering from a lot of pain and lack the of sleep - which is most likely caused by the pain. I try taking herbal nytol when it becomes more of a major problem, however it doesn't also work, I have found that you usually need to be relaxed in the first place for it to work. Another thing I found which helped was burning ylang ylang oil however it is very potent but I have found it is a great relaxer.
More details about it can be found here: http://www.aromaweb.com/essentialoilspz/ylangylang.asp
However you do need to be careful with the oil as it can cause side effects if you burn it too often.

HMS does explain the easy bruising! And I have read that IBS is also linked to it.

Sorry I couldn't be of much help!
Kayleigh x