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Fibromyalgia and Hypermobility Syndrome

Discussion in 'Health and wellbeing' started by sparklyrainbowfish, Jul 17, 2010.

  1. sparklyrainbowfish

    sparklyrainbowfish New commenter

    Hi everyone
    I've recently been diagnosed with fibromyalgia and hypermobility syndrome and am not sure what to do next. I've always had aches and pains, most of which have been unexplainable (other than a diagnosis of irritable bowel syndrome when i was 18). I've learnt to accept the fatigue as no doctor would help me with it and my low moods are again something I have just had to accept as I don't want to be on antidepressants permanently.
    I finially got diagnosed because I've had joint pain for about two years that started in my fingers but has spread to hands, wrists, ankles, hips, shouders and elbows. My knees are mostly ok. Turns out that the pain is due to the hypermobility syndrome. Typing or writing lots makes my hands and elbows hurt because of the position of my arms and the repetitive movements.
    My question is this:
    I have been asked by my work what adjustments they can make for me. But I don't know. My memory is bad due to the fibromyalgia so I've asked for important information (deadlines etc) to be given to me in writing. My chair is both comfortable and supportive so that's ok. What else do I need to consider and ask for? All I know is that I get very tired and I hurt all the time. What can my school do to help me with this? The other symptoms I get (IBS, headaches etc) are just things I have to try to deal with as they happen.
    I'm glad they're offering me support and understand the nature of the conditions. But I don't know what adjustments can help to make me life easier. The consultant is seeing me next month to discuss therapy and pain management.
    I'd be grateful for any suggestions.
  2. Not so sure about "dealing with things as they happen".
    I suggest you write down all the questions that need answering before you see the consultant. You don't have to turn up with a clipboard, just get things clear in your mind and a brief checklist for you to make sure you've covered everything during the consultation. The consultant has probably helped a lot of people with work-related stuff.
  3. I totally understand where you are coming from, I have both f and hypermobility - it freaks my boss out that my joints are so hyper mobile but I have found my lifesavers are insoles from the podiatrist - totally fantastic they reduce the hypermobility in my ankles and have reduced some pain in my feet and ankles too.
    As for work, I get everyone to write things down (email is usually better so i can't lose the notes) and also say to nag me if I forget something, at first they were embarassed to do this but they are getting better at reminding me if I have forgotten to do something.
    Also make sure that you are using the right combination of drugs, if you are in too much pain then ask for a drug review and look at using some of the newer drugs on the market - LYRICA (epilepsy drug but blocks nerve impulses in f sufferers) is pretty good if used in combination with other painkillers (TRAMADOL and NAPROXEN are worth a shot too)
  4. Hi Sparklyrainbowfish,
    I know that you posted this thread some time ago, but I was wondering how you had got on with teaching since your diagnosis? I ask as I am currently at the start of the same journey with a suspected diagnosis of HMS, Fibromyalgia, Chronic Pain Syndrome and IBS.
  5. Actually, under the Equality Act the employer has a duty to make reasonable adjustments. AtW will do a free assessment and it is only if equipment is needed that there will be any charges. AtW are very good and will suggest ways in which things can be adapted - these adaptations are not necessarily costly, they can also come up with ways in which working practices can be changed so that someone can work effectively. It is well worth getting them involved.

    I don't know a great deal about fibromyalgia but hypermobility is a pain and causes all sorts of different problems. I hope you are getting support from physio and occupational therapy for this as well. I have just got some fantastic support via occupational therapy. In our area you can self-refer via the local hospital and they have been incredibly efficient, especially compared with the rest of the NHS. I am in a situation where I am just about to see a neurologist after more than a year and a half of becoming progressively disabled. I'm hypermobile but I seem to also have some sort of neurological problem with some fairly complicated symptoms.

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