By Alison on Tuesday, January 22, 2002 - 05:30 am:

I've had chronic knee pain since I was 13 (I'm 27 next month) and started doing Pilates a couple of years ago, when I had the most recent bout of severe pain, to improve my core stability, improve muscle tone etc. I've found it really helpful (all the exercises I'd been given in the past had only made the pain worse) so for the moment I'm not really in that much pain, however I am totally exhausted.

I've just started my 3rd week away from work. After 2 weeks I got bored at home and went back to work; I lasted 'till midday and then had to go home as I felt so shaky.

Prof Grahame diagnosed me as having Hypermobility Syndrome in September last year, and while I have felt really tired and exhausted before it's always coincided with severe knee pain so I thought that was the cause. Now I'm not so sure. My theory is that since Hypermobility seems to be caused by the body's inability to produce proteins our bodies are less able to repair themselves. I have had a very busy/stressful few months, but I thought I was pacing myself. I'm really shocked at how my body has reacted - I've never spent so long sleeping before (at least not when my knees aren't bad).

Has anyone else found this? If so, how do you cope? Thanks in advance for any ideas or comments.

Alison.

By Ian on Tuesday, January 22, 2002 - 03:40 pm:

Alison,
With hyper mobile joints the joints have more than normal movement and are unable to control properly. Muscles surrounding the joint try to prevent dislocation or subluxion and the better the person's muscle tone the more likely it will be that the muscles will do their job. As well, the muscles will have to do less work in a person who is not carrying excess weight.
You are exercising and you are working so you are using much muscle effort. The sleep is not harming you it is simply your body allowing recovery of the muscles.

By Gwen Nelson on Tuesday, January 22, 2002 - 06:37 pm:

Alison, I cope my sleeping when I feel the need. Some days I am so physically exhausted it feels like wlaking with lead boots on and I'm scared I;m going to collapse because my legs won't hold me up any more. On days like this I just give in, phone into work and take the day off. Generally I sleep about 24 hours and feel better next day. I also find that when I get this tired my muscles have a fine tremor once I rest and different bundles of muscle fibre twitch, particularly around joints that have been injured. The only way to deal with it is to fill up on analgesics, take a sleeping tablet and let myself recover.
I've also learned not to be Supermum and try and maintain the same level of housekeeping, cooking etc that I used. Dust is a low priority in my life and frozen meals and takeaways are regular features of our diet these days. I figure my family are better off having a relatively pain free, non-depressed mother that an immaculate house. It also teaches them to be self reliant. If I say I'm having a bad joint day they know they have to fend for themselves and over the years they've become pretty good at it.

By Kerry on Thursday, November 21, 2002 - 08:33 am:

Hi there!
I'm an 18 year old university student who was diagnosed with hypermobility just over a year ago. Recently i've been sleeping overtime, and am constantly knackered - i wasnt aware that this could be due to hypermobility. Is there any advice you can give me as it has started to affect my studies?

By Sheena on Thursday, November 21, 2002 - 01:47 pm:

Hi Kerry
Is this your first year away at university? You are probably using different chairs, beds, desks etc and (perhaps!) studying for longer periods? If your furniture is not right for you, your body is working hard just sitting still, and you may not be getting good rest when you are in bed.

My daughter has had to take my super-adjustable office chair to uni with her as she could not study in the chairs provided - she keeps the chair in her own room, and has to use regular chairs at lectures etc, but at least she can be comfortable some of the time. Another girl has persuaded some organisation (sorry, don't know which) to provide a special chair for her use in the library.

You need to get assessed by a physio who understands hypermobility and find out what your requirements are. You may have to buy them yourself, or you may be able to find a way to get them, but to do this you have to be prepared to be classed as a disabled person. You have to tell the authorities that hypermobility syndrome is a disability - then they can deal with it. They are supposed to help disabled students get access to study. It can also help if your diagnosis says you have Ehlers-Danlos Syndrome (Hypermobility Type), as doctors tend to think EDS is more serious than Hypermobility Syndrome (although we know that they are the same thing).

I hope I haven't upset you by suggesting that we are disabled people - it's just a way to explain our needs to people who haven't heard of hypermobility.

By Kerry on Friday, November 22, 2002 - 07:23 am:

Sheena
Thanks for your reply. As i'm new to this, any advice helps! I never thought of it in terms of a disability - instead just one of those things that will go away eventually! But im beginning to realise this is not the case - guess im in for the long run! Can a physio tell me whether i have EDS? Are there any differences at all between that and the hypermobility syndrome?
Regards
Kerry.

By Sheena on Friday, November 22, 2002 - 09:25 am:

Hi Kerry

I have found out much more about hypermobility since I joined the Hypermobility Syndrome Association
www.hypermobility.org/
Their professional advisor is Prof Rodney Grahame. I have seen him and been diagnosed by him. He believes that HMS and EDS (Hypermobility Type) are the same thing, but you will find that some doctors insist that there is a difference. Prof Grahame is one of the world experts, so I am happy to take his word for it. (You will find some discussion about this already on this board.)

Do you live in the UK? Have a look at the Hypermobility Syndrome Association website and see if you can find a local expert, or you could phone them for help. You have to be diagnosed by a doctor, not a physio, but the doctor would then pass you over to a physio for exercises or help with any aids you need (which may be suggestions for how to carry your books around, or how to set yourself up in the best position at a desk for writing or using a PC).

I personally have found that the aches and pains coming from hypermobility vary depending on what I do at home, at work, etc. I didn't know I had it until I was nearly 50, but looking back I had pains in my feet and back when I was at school and university which I did not understand. They went away for many years. With rest your pains should go away, then if you can keep your level of general fitness up, and keep your muscles reasonably strong, you will be able to avoid the worst of them. Don't suddenly become a fitness addict, or you will probably injure yourself! Just keep yourself active.

Good luck
Sheena

By bree on Saturday, November 23, 2002 - 02:32 am:

Hi Kerry,
I've got exactly the type of excessive fatigue and sleep troubles you describe, and the docs seem to prefer to add 'fibromyalgia' and 'chronic fatigue' to the hypermobility diagnosis (when they're not telling me I'm just depressed, etc!). I've had this problem for nearly four years, and its really ruined every aspect of my life, especially my studies. Your case may not be the same as mine of course, but my advice would be to try and get this fatigue under control before it gets chronic like mine, if you can at all. Obviously, effective treatment for the fatigue would be best, but I've not come across any yet. However, Sheena is right in suggesting that pain/fatigue problems can be seen as a disability, and accounted for as one at universities. You don't say what country you're from, or what sort of course you're doing. I'm in Australia, and I'd just started a PhD when I got sick, and my university has what's called an 'Equity and Diversity Centre', and part of it is the 'Disability Liason Unit'. Your Uni should have something similar, or you could ask your student union. Once you sign up with this sort of unit (which needs medical documentation) they're the ones to arrange alternative assessment arrangements (if you need extra time in exams, or afternoon exams, for eg), note-takers in lectures and tutorials, voice-recognition software, special furniture, or access to what my uni calls a 'recline room' (if you need to rest between tutes, for eg). You could also talk to your lecturers and tutors about any special needs you have, so they'll be more sympathetic if this fatigue ever does become a huge problem. I'm sure Euro or US universities should have similar facilities for disabled students. You might also think about getting some sort of disabled parking permit from your local government - not having to walk a kilometre from the carpark to my office is a godsend for me. I know it can be nerve-racking to talk to anyone about being sick, let alone the powers that be at university, especially when it's your first year. But I really think it would be far worse for you to get halfway through your degree and fall in a heap, like I did. In terms of the uni, I think put off asking for help for too long after the pain and fatigue started, and I'd really hate for the same thing to happen to you.
Bree
breehadley@hotmail.com