tag:blogger.com,1999:blog-8913410527801032443.post387274263017627968..comments2023-05-10T04:06:34.174-07:00Comments on Living Bendy: My bendy storyCarriehttp://www.blogger.com/profile/06496819852705481151noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-8913410527801032443.post-69142076712590931562014-01-07T14:45:01.363-08:002014-01-07T14:45:01.363-08:00I was diagnosed as having hms about 8 years ago an...I was diagnosed as having hms about 8 years ago and more recently diagnosed as having fibromyalgia. These stories have so many parallels with my own. I find that I too have been left to 'just get on with it' as doctors seem to have little understanding.<br />I live in Newcastle and would be hugely grateful for any information on specialist treatment. Hopefully some time in the future there will be better understanding, diagnosis and treatment for these conditions.<br />Wishing you all the best of luck in your battle xAnonymoushttps://www.blogger.com/profile/03872180585327138015noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-84818544708136922962013-07-09T01:18:39.156-07:002013-07-09T01:18:39.156-07:00Very good info. Lucky me I came across your site b...Very good info. Lucky me I came across your site by<br />chance (stumbleupon). I've book marked it for later! <a href="http://www.etoims.com" rel="nofollow">back muscle pain in Hong Kong</a><br />is a non-invasive pain therapy treatment for individuals desiring general physical health maintenance and enhancement or relief from chronic pain.Muscle Painhttps://www.blogger.com/profile/18134611108729463434noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-33288095615409299672013-04-25T13:16:27.549-07:002013-04-25T13:16:27.549-07:00Have just found your article and wow you could hav...Have just found your article and wow you could have been describing my daughter! Chelsea was diagnosed aged 9 by our fab gp who identified HMS straight away however since then she has just been told to get on with it. Now aged 20 she is in severe pain with chronic abdomen pains which I'm sure are linked to the HMS, no point asking tho cos nobody knows what I'm talking about. I will show her your article which I hope will make her feel better or understood at least. I hope you are well and continuing to manage your painAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-45541710841941189672013-01-23T15:55:44.748-08:002013-01-23T15:55:44.748-08:00Wow, reading your story is just like reading about...Wow, reading your story is just like reading about my own life.<br /><br />I'm currently at the stage where the rheumatologist at my local hospital diagnosed hypermobility syndrome and then said that it won't cause any problems and that I'll stiffen up to normal levels about the time that all my friends start complaining of getting stiff and feeling their age. Apparently HMS can't cause the kind of pain that I have so I should go back to my GP to ask about other conditions. Grr.<br /><br />Thank you for writing your blog, I plan to read more of it tomorrow and I'm sure I'll gain lots of useful info.Faethehttps://www.blogger.com/profile/17297668465056454601noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-82983744906125907202012-10-30T13:04:04.483-07:002012-10-30T13:04:04.483-07:00My gp has referred my daughter aged 8 to a rhumato...My gp has referred my daughter aged 8 to a rhumatologist and suspects shes has this condition. she has been troubled with constipation since being a baby and only now is she getting help for it from the community nursing team. <br /><br />She also found it difficult suckling from a bottle and found weaning hard as she used to choke on food as a young baby.<br /><br />She has had chronic stomach ache and leg pains which has been ignored and dismissed as one of those things but has not been taken seriously and struggles to keep up when we go distances for which she has now just been given a wheelchair. She has had insoles for flat feetsince being a young child and needed piedro boots as a baby as her feet used collapose under her weight so she could not weight bear.<br /><br />She has startted complaining of pain in her back and shoulders and now has scalpular winging. New things keep cropping up<br /><br />Profeessionals have acknowledged she is hypermobile and bendy but not linked everthing going on with until the gp did so we are hoping to get her diagnosed and hopefully given the right management to avoid damage in the future.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-29054744575571002842010-06-13T19:05:31.491-07:002010-06-13T19:05:31.491-07:00Thanks for sharing and so sorry it took so long fo...Thanks for sharing and so sorry it took so long for you to be diagnosed. It shocks me that there are some people who are reaching their 40s, (and one lady her 60s!) before diagnosis.<br />Just so you know, 'joint hypermobility syndrome' is the same as 'hypermobility syndrome'. If a rheumatologist gives you this lable it's usually becuase they do not understand the condition. This rheumy seems to be one of those given the advice to your daughter to just 'get on with it'. <br /><br />If you can get yourself to www.hypermobility.org There is a list of hms clinics in the uk on the site which I would heavily recommend you have your gp refer both you and your children to for a proper assesment. There is always a small chance that a rheumy who gives you and old label from not understanding the condition could have missed signs of Ehlers danlos Syndrome. Hms is a type of ehlers danlos but there are other types that can be more serious so always a need to have them ruled out properly.<br />Professor Bird at the leeds clinic is retiring so not seeing any new patients (although another dr there is) however if you are in the north of england and can easily get to Newcastle I can give you the name of a specialist there who is trying to set up a hms clinic (he has hms himself and is developing a great reputation).<br />Don't leave it with this 'here is your out of date diagnosis just get on with it' advice from this dr as you and your children could be in the need of essential phyiso and pain management that I'm guessing this dr will not offer.<br />add me on facebook if you can (searce for visionlessart or carrie beckwith - in the newcastle region) and I will give you contact details and suggestions for your gp.<br /><br />cxCarriehttps://www.blogger.com/profile/06496819852705481151noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-29158212318638498802010-06-01T02:44:18.354-07:002010-06-01T02:44:18.354-07:00Thank you for sharing your story. So sad it took ...Thank you for sharing your story. So sad it took so long for you to get the proper diagnosis. I was diagnosed with fibromyalgia over 20 years ago then last year a rheumatologist said he thinks I was misdiagnosed and I have hypermobility. I am 44 now and have severe arthritis in lower spine. My 9 year old daughter has been diagnosed with joint hypermobility syndrome which she has had since birth. My 14 year old has just been referred to a rheumatologist by orthopaedics who have diagnosed joint hypermobility. Thankfully a different rheumatologist than the one my 9 year old saw who said that most Olympic gymnasts and swimmers are hypermobile so my daughter should just get on with it. Hope everything goes well with your new care plan.Anonymousnoreply@blogger.com