2,024 Posts

chronically_abbie I have a slight obsession with DVDs,I dunno why but I love watching and seeing new different things,and DVDs are great when I'm stuck on the sofa,I've ordered a pink portable DVD player so yay for that #fibromyalgia#crps#cfs#scoliosis#hypermobile#hypermobility#chronicpain#chronicpainsyndrome#IBS#pots#sleepapnea#invisibleillness 2h

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strengthflexibilityhealtheds Interesting #EDSFact - in one average #physicaltherapy office, 17% of randomly selected patients were #hypermobile & tested greater than an 4 on the #beightonscore. 86 total patients were selected randomly & only one was actually dx with #EhlersDanlosSyndrome - Me. That's greater than 10%! That's 17% of patients in just an average #PT office & almost all had not been diagnosed with #HMS or #EDS...yet. And that doesn't even count those who are not so #flexible & are more tight, so they would need to be assessed using the #BrightonCriteria. This case study was done by the PT I see & was presented a few weeks ago at the National PT conference. Because of what was found in his own practice, my volunteer work with #EDNF, as well as because of his interest in EDS & what he's learned from working with a known EDS doc, we will be putting #hypermobility talks together for both patients and other PTs. I knew my PT was working on a presentation, because he asked to take to pics of my Beighton Score test; however, I can't say that I'm shocked to see that 17% of randomly selected patients would receive an EDS dx if they sought it. I think this just is a small glimpse of how "not so rare" #ehlersdanlos really is. It's validating to say the least. #livingwitheds #just5minutes #OurStoriesOfStrength #InvisibleIllness #ChronicPain #Spoonie #fitmom #fitfam #yogaeverydamnday #health #Stronger2Gether #healthcare #exercise #yoga #chronicillness #igflexibles 13h
  •   fit_fearless_mom Love it! 7h
  •   geekabs Like it! 7h
  •   reelymegan When I brought Dr Pradeep Chopra's report that had the diagnosis of classical type EDS (w/a slew of other dxs) my PT was floored. She had never heard of it and dove into research, as well as, educated the rest of the staff about connective tissue disorders using my case as an example. So glad my situation can help others in the future! 5h
  •   strengthflexibilityhealtheds @reelymegan - yes, it can. Little by little we all can help and make a difference for others. 3h

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chronic_health Be more kind. If people had been kinder to me, I would not have been in such a bad place this past week. You never know what battles someone is fighting. 16h

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my.chronic.diary My absolute #HolyGrail #HairCare has to be #Redken All Soft Shampoo & Conditioner If there's one thing that will make your beauty routine easier with #ChronicIllness, it's good hair products ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Ever notice when you buy a new shampoo, that's it starts off great and by the time you reach the end if the bottle you're having bad hair days left right and centre?! ️ That's because cheaper hair care products contain too much ALCOHOL, SILICONE and SALT ️This dehydrates the hair and leaves a waxy layer on the strands ️ A good shampoo and conditioner, will penetrate the hair shaft and smooth the cuticle.... And a smooth cuticle, means smooth, soft, manageable, healthy hair! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Redken shampoo and conditioner will cost you approximately £20 for the two. BUT!.... It's 5x more concentrated that cheaper products, meaning it will last you months longer You need this in your life! 1d

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chronically_abbie These are all my small aids and medical things that I couldn't cope without,my heat pad and water bottles are great for my aches,my wrist bands are great for my hand pain and when I use my crutches,my arm and knee straps help with my hypermobility and help my joints stay in place and not dislocate and they are super comfy,my tens machine is my best friend it helps alot with pain and my nerves,then my basics vics and soothers for my glands,as I have chronic sore throats and swollen glands everyday which sucks as my mouth is full of blisters,blood spots and ulcers. Basically these things are great and give a little help which I'm grateful for #fibromyalgia#cfs#crps#chronicillness#chronicpainsyndrome#chronicpain#scoliosis#hypermobile#hypermobility#ibs#pots#sleepapnea#insomnia 1d

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chronic_health It's the first day of Autumn. Soon the leaves will fall and the streets start to look like this. 1d

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amygwhitworth Rest day from training, 4 weeks in on the @ldn_muscle #bikiniguide and the #glutes and #quads are definitely coming along nicely! #cleaneating #fitness #healthy #motivation #girlsthatlift #strongnotskinny #hypermobile #doublejointed 1d
  •   ldn_muscle Looking fab 1d
  •   emace89 1d
  •   theogountro Why do you say "double jointed" ? @amygwhitworth 18min
  •   amygwhitworth @theogountro my joints have a bigger range of movement than normal, for example, my knees bend too far back, along with the majority of my other joints. When people say you're very flexible and can bend in ways you shouldn't be able to, they'll usually say double jointed, but it's called joint hypermobility. 6min
  •   theogountro Ho ok. Can you show me exampkes, with photos of yours hypermobility ? In instadirect if you want @amygwhitworth 5min

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unclehc Today is worldwide rare disease day and in October I was finally diagnosed with #ehlersdanlossyndrome . This means I am hypermoblie and although I'm full of tricks, I am in constant pain and fatigue. We think that this disease was misdiagnosed in my grandma and eventually caused her death. What I have to say is, if you have a feeling something is wrong, search, research, and advocate for yourself! #spoonie #chronicillness #eds #eds3 #hypermobile #rarediseaseday 2d

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laurenlovesyou2015 I rarely use the word suffer but when flaring it is hard to keep positive about everything. EDS is a very difficult syndrome and nearly no one knows about it at all #raredisease #zebra #eds #hypermobile #chronicpain #chronicillness #chronicallyawesome 2d

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chrissypayne93 Had a pretty shit couple of weeks, backs been hurting a lot today, now chilling on the sofa with the love of my life and my fur babies under our twinkle lights #happy #hypermobility #hypermobile #ehlersdanlos #spoonie #spooniesupport 2d

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my.chronic.diary I love these #easy #healthy muffins .............. Preheat the oven to 180 C / Gas mark 4. Grease 18 muffin cups, or line with paper muffin cases
Mix together mashed bananas, egg, water and oil in a large bowl
Mix in flour, bicarb and baking powder until mostly smooth (you will still see lumps from the banana, but that's okay!) Sprinkle on a few dark chocolate chips Bake in the preheated oven until golden and the tops spring back when lightly pressed, about 15 minutes Remove muffins from tins, and cool on a wire rack so quick and they taste amazing xx
2d

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laurenlovesyou2015 Medication, tea instead of coffee, water and working. Because even when flaring I can still work! my at home business! #bestjobeva #flare #psoriasis #psa #psoriaticarthritis #eds #hypermobile #chronicillness #chronicallyawesome #pain #chronicpain #rheum #autoimmune #spoonie 2d

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cakesandunicorns I ️ my sisters •just massively subluxed my knee getting up off the floor and feel like today should be a jammies day but I'm going out, can't have cocodamol for the pain because it makes me feel sick, stuck wih naproxen and paracetamol #morespoonsplease #spoonie #hypermobile 2d

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my.chronic.diary How many times have you heard yourself say those words?..... "I'm fine." Why is it we never admit how we really feel? 💭 Are we scared of what people will say? Of being judged? Is it because we look so "normal" on the outside, maybe they won't believe me......... Or are we kidding ourselves, because the reality is too hard to face. ️Lets try and be honest here about how difficult our lives can be, it's a painful truth and one that's taken me a long time to accept ️ We are not always fine..... we are frustrated, angry, hurting. But remember also that someone has taken the time to ask you if you're ok... We owe it to them and ourselves to be honest. Next time someone asks how you're doing, simply answer. "I'm not too good today, it means a lot to me that you asked.... I will keep smiling, because I know there are people who care enough to see how I'm doing. Thankyou" Once we start being open and truthful with others, but more importantly ourselves, we can start accepting our illnesses instead of tirelessly fighting them 2d
  •   my.chronic.diary @danielle32991 Ive felt like this at time too 😕 But I think it's a balance between, being truthful, without sounding like you're whining or moaning or being negative. If someone asks me how I am, I will be honest with them, but I'll always make a point of asking how they are too. I guess it's more about sharing your problems with them, rather than it being one sided..... By being honest with them, you also find out very quickly who the genuine people in your life are. This is another painful thing to have to deal with, because people you think you know, will start to show their true colours.... These days I only have people in my life who genuinely care about me, and me them xxx 2d
  •   danielle32991 I'm the same way. I'm always there to listen to other people's problems and I try not to sound like I'm whining or being negative but I still feel like people can only take so much. All of my friends are young and vibrant so they have no ideaaaa what I'm going through 2d
  •   my.chronic.diary @danielle32991 Ahhh, I know how you feel, it's so hard seeing other people around us who seem to be enjoying life. I've felt sad so many times and felt like I've been missing out. I don't think anyone will truly understand unless they've been there themselves.... I hope at least that you have some understanding people in your life. If not, you can talk to me anytime xx 2d
  •   danielle32991 Thank you :) same to you 2d
  •   1018survivorandhappy @my.chronic.diary thank you...yes, it breaks my heart. I try my best not to let it show. She has lupus, fibromyalgia, and Graves Disease. 1d
  •   my.chronic.diary @1018survivorandhappy Ahhh well she's very lucky that she has such a supportive, understanding momma xx 1d

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