Saturday 23 August 2014

M.E./C.F.S. and Hypermobility Syndrome

Hello!

Foggy would like to tell you all about the link between Hypermobility Syndrome and M.E. Sally has both....Foggy just thought Sally was bendy!

Foggy thinks that Sally is on a huge learning curve with this campaign; she is learning things about her own body as the campaign progresses! Foggy has used all of his doggy memory to put together a timeline of Sally's illnesses since childhood; maybe you will be as baffled as we are about how a lot of NHS doctors haven't linked it all together!

Baby years - Tested for Coeliac disease, belly button hernia
14-16 -undiagnosed illness. Lots of tests....2 years of sporadic school non attendance due to extreme fatigue, feeling fluey, nausea
18 - diagnosed with Hypermobility Syndrome - joints had become very painful
24 - Generally unwell, skin rashes, swollen tongue, started anti-candida diet
27 - Severe reactions to stress started - swollen tongue, heart palpitations, panic attacks -issued with an Epi-pen when reaction very severe.
30 - Labyrinthitis ear infection - lasted 6 weeks.......and then 2 weeks later..
30 - Start of all sensory migraines and M.E (Although it took over 2 years for her to be diagnosed)
31 - Allergies and intolerances started.
36 - Depression

All of the above can be found under the umbrella of M.E.

Patch has told Foggy that Sally has always been a bit sickly and 'a delicate little flower'. None of us realised that everything could be linked together. So, Sally isn't just raising awareness for others; this campaign is helping her get her head around why she has always been 'not quite right'.

Foggy has attached a link for Hypermobility Syndrome. It lists symptoms and causes etc. What it doesn't mention is the crazy spine-tingling sensation that is extremely disconcerting and causes Sally to wriggle about when she has been sitting for too long!

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Symptoms.aspx

Sally had physiotherapy when she was 18 to help with the Hypermobility Syndrome. It didn't really help but it did temporarily help with posture etc. At the grand old age of 37 she now sees a Chiropractor who helps to 'reset' her joints. Her neck is particularly mobile and that causes a lot of discomfort.

Foggy snogs xxxx

2 comments:

  1. My goodness Sally, what a journey! It's interesting to note that I could relate to some of it. For example, I have just begun experiencing rashes, burning and crazy inflammation. First it was triggered by heat, now it's triggered by scent. I'm just praying my doctors figure out the proper mix of meds I need so I can at least leave my house! I feel like I'm becoming bubble girl! I also can appreciate your frustration when doctors can't seem to connect the dots. I love what you are doing to help us in spite of your own health struggles.

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  2. Thanks for your lovely comment; this campaign is a pleasure to do so I am glad you love it as much as I do. Stress is what causes EVERYTHING in my life. Caffeine exacerbates the stress symptoms...I used to think caffeine was my biggest problem until I realised I drank coffee when I felt stressed! I know what you mean about 'bubble girl', on a recent holiday in Malta my body was so overloaded and stressed by the change of routine, my system went into overdrive. I initially thought it was what I was eating so I barely ate ! M.E. is a constantly evolving illness, more symptoms crop up on a monthly basis!

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