2,346 Posts

chronically_abbie Morning️|| I haven't had a good time mentally lately,I have been quite unwell and it's super hard to just get on with day to day things when your feeling this rubbish physically I'm okay ish,just the normal pain and migraines,nothing I haven't felt before,today I started my day of with some fruit,water and a magazine yay,I have changed my eating habits alot in the last week,because of my mental health whenever I eat I feel extremely guilty and disgusting so maybe if I stick to small healthy potions a day,I won't feel that way. I'm going out with my friends for one of their birthdays,only to my local town for some food but I can't wait for a catch up #fibromyalgia#chronicpain#chronicpainsyndrome#scoliosis#hypermobile#hypermobilty#ibs#pots#sleepparalysis#healthy#healthyeating#food#willbeskinny#mentalhealth 25min

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surahlovesreptiles Oh the wonders of ehlers danlos syndrome!! (Outfit was made by me) ehlersdanlossyndrome #hypermobile #spoonies #purplehair #weeaboo #otaku #jfashion #sailoroutfit #cute #weird #kawaii 6h

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drbri1111 Do you stand like this?? #hypermobile #ehlersdanlos #flexiblefeet 7h
  •   ztrukanna haha, yes, I do! 7h
  •   aninkyaffair Yep. 6h
  •   welding_prodigy Wait this isn't normal either? My whole life everyone has stared at me while standing like this. 3h
  •   galpaltristen All the time, but I go more the other direction. 24min

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Video △⃒⃘Judifer Hendrix Castañeda

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latetothegym Drew a quick little #cartoon to illustrate my current physical status.

Apparently my joints and tendons get aggravated easily. Whenever I get in a solid groove at the gym (read: a week or two of working out twice a week), my joints flare up and force me to take time off again. Just finished taking two weeks off leg work to let my knees heal, and after just a few light squatting sessions they hurt worse than ever. One week of #curls has my elbows super sore. And my shoulders only feel okay at the moment because I've avoided any overhead movement for months.

This would be easier to understand if I was trying to push huge weight or something, but even on the few lifts I have been maxing my numbers are still very low relative to my weight and body size.

I don't know if this is because I'm getting older, because my joints are #hypermobile and unstable, or if I'm just lucky and have shitty tendons.

Either way, I have to listen to my body, even if I hate what it's telling me. For whatever reason, what I'm doing now is causing problems, and I need to stop/change it or risk injuring myself further.

I may have to take some time off of the weights for a while (as in, more than just a few weeks) and see if I can't get things to heal. Which means I'll basically be starting over at square one again when and if I do get back to it.

Am I the only one out there dealing with this?
HURRRRR SO FRUSTRATING. >>>>#fitnessafter30 #jointpain #gymproblems #fitnessproblems #tendonitis #tendinosis #muscles #joints #tendons #injury #setbacks #fitnesshumor #fitnessjourney #fitnessprogress #nerdswholift #guyswholift #designerswholift #fitfam #fitnesslifestyle #fitnesslife #lifting #weightlifting #strengthtraining
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  •   jonasragnarok Fucking love it! :) 1d
  •   b.t.b_fitness Exactly my life in a nutshell! -_- Reposting 1d
  •   sgnutritionfitness Super! 1d
  •   thinkonpurpose Make sure to see if you need inserts in your shoes. It throws off your entire body if you have pronated or supinated ankles. Elbows make sure you're keeping them in close to your body to reduce torque. Shoulders are also easily overloaded. Ice and arnica. Stop going so hard and ease into it with light weight and high reps. 1d
  •   latetothegym @mrjamesphan I take it! Not sure if it helps but it can't hurt. 1d
  •   latetothegym @thinkonpurpose All good advice, and thank you for it. I'm always trying to dial in form and it seems I need to modify my approach as well. 1d
  •   mari3rose Definitely not the only one! @latetothegym 1d
  •   miranda_fit907 Hahah... Illustration spot on 11h

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ally_thorisdottir Too flexible for my own good. How close can your grip go? @admpap so close to doing it with my hands completely together #crossfit #crossfit201 #ohs #hypermobile 2d

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battlestobeat Starting the day off with a relaxing bubble bath to hopefully help with the aches and pains abit, my parents still aren't being at all understanding so are just constantly shouting at me! I live next door to them in an annex and I don't have a bath so I use theirs, but that means I have to bring round a towel and clothes etc which is basically impossible on two crutches, unstable shoulders and un able to weight bear on 1 leg! So I had no choice but to put everything on the wheelchair and bring it round that way, I text my mum what I was having to do and instantly my mum comes round shouting at me saying you can't get reliant on this wheelchair etc, grabs my things and takes them to hers! I've not even used the chair yet and don't want to use one so I'm certainly not going to be reliant! And all I needed was for her to help me in the first place! So down right now for many different reasons and so stressed with everything and on top of that I have 5 college units to all be completed by the final deadline on 22nd may! Sorry this isn't a very cheery post, this is the only place I feel I can share my feelings a bit with others that hopefully understand a little, how are you all doing today? #eds #elhersdanlossyndrome #chronicillness #chronicpain #achesandpains #bubblebath #depression #stressed #dislocations #hypermobility #jhm #hms #hypermobile #doublejointed #jointhypermobility #pain #spoonie #zebrawarrior 2d
  •   aliciaboe That is awful. They are obviously having trouble being empathetic and understanding! Have you thought about taking them to your dr to help explain what you're experiencing? 2d
  •   battlestobeat @aliciaboe they come to every Drs appointment with me they are just the kind of people that don't believe what they can't see! And obviously this is an invisible illness most of the time apart from dislocations which dad helps me relocate but they still say I should just be used to it now and no pain etc, so hard to get them to even trust and believe me most of the time let alone empathise, I feel so alone coz of my family not being understanding etc, my mum is a little more caring but both still don't listen to me when I've hit my limits and can't push through anymore etc x 2d
  •   aliciaboe @battlestobeat that must be difficult considering all you have to deal with on top of that! It's already very isolating have a chronic illness, the last thing you need is to feel more like no one understands you! If you really can't reason with them, My other suggestion is a counseling session where someone can be the third party for you and help them to understand the mental strain they are adding to your battle. Though the worst part is that's another outing to get to which would be more mentally and physically exhausting!! It's so tough having to count your spoons like that! At least you have the spoonies online! We get you 2d

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battlestobeat ( I know I look awful in this, trying to fake a smile) So today i picked up this wheelchair from the British Red Cross, as you can see my dog sky wanted to try it out too! Haha... she is actually really calm with me right now and is there for me cuddling me after a seizure etc, as she can tell I'm not well. This chair is only a temporary thing as I need to give this back in 8 weeks, but I am only getting this because things have got so bad recently. although my family really don't think I need a wheelchair! I really don't want to be in a wheelchair! But they don't know how I'm feeling! I won't really be using this only if I go out like shopping once or twice and to make things easier when i wake up from a seizure with both shoulders and knee dislocated so they have had to drag me on a towel before which was awful!I feel like having a wheelchair of my own could be helpful in some situations just as an every now and then thing, especially as I'm meant to be walking miles each day in theme parks on holiday in Florida for 3 weeks in the summer! But I have no idea how to get my family to understand and be supportive! Any tips? Stay strong guys you are all strong and amazing! #zebrawarrior #edswarrior #elhersdanlos #elhersdanlossyndrome #eds #dislocation #redcross #britishredcross #wheelchair #dog #spoonie #hypermobility #hypermobile #jhm #hms #staystrong 2d
  •   bepeacefulb It is totally fine and normal for us EDSers to need a supplemental Mobility aid. I am currently on the brink of needing one sometimes for going out, and I am 24. This syndrome varies so much for people, and is not a "one size fits all" type of illness. We have different needs, and a wheelchair is one for a lot of us! Wheel it on girl and own it! You are a warrior battling a horrendous battle against chronic illness. 2d
  •   battlestobeat @bepeacefulb I feel that I personally need this, especially for right now anyway, but my family won't have any of it and not letting me use it at all, and only have this on loan for 8 weeks! I don't know what to do coz I don't know if Things will improve so I might not need one but don't know if pain and symptoms will go up and down, also no idea what to do with trying to get my family to understand coz they defo won't let me have a wheelchair but it's me suffering but hey just think I actually want to have. Wheelchair like I'm happy to have one!!! I just don't know what to do x 2d
  •   missluceyinthesky Hey nice to meet you, I have had CRPS for 5,1/2 years. Its a nerve disease that has great decreased my mobility. I got a wheelchair so I could "walk" long distances again, just so I didn't have to miss out on stuff I love like museums and shopping and I went on holiday to Europe for a month. I meant where I physically couldnt have walked and would have stayed home and missed out I got to join in. The rest of the time I walk with my European crutches as much as possible and exercise everyday to stay strong because it's really important. A wheelchair can be a great option as an occasional aid for spoonies like us, have you asked your doctors about it? Maybe they could talk to your parents. Im so sorry your in so much pain right now and not being listened to at home. Spoonie hugs xo. 1d

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X-Pro II Just A Little Fag
emma__lelxox Today hahaha cant see my face but sure #splits #hill #feild #grass #lol #sun #hypermobile #park #hypermobility 2d

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doublejointedyogini Many of you know my long history with my #hypermobile #shoulders... I am the queen of "oops my shoulder slipped out of its socket again!" Great for party tricks, horrible for #inversions. #Handstands have been my nemesis for years, especially after two major dislocated shoulders kept me in PT instead of on my mat. Slowly but surely I've built the muscles in my arms and shoulders and FINALLY feel confident enough to "risk" hang time off the wall. #practiceandalliscoming

Had the AMAZING pleasure of taking @melindababbott's #poweryoga today next to Jewel Elizabeth. Of course I stayed to play after ;) LOVE my #Equinox #Fitfam 🏼🏼🏼
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silverzebraproject Only 21 likes away from doing my necklace & key ring give away! I'd be so grateful if anyone shared this so I can hopefully get to 500 tonight and start the giveaway!! Get all your friends and family to like! #thesilverzebraproject #prizegiveaway #spoonies #bendys #zebras #necklace #keyring #hmsa #hms #hypermobile #hypermobility #hypermobilitysyndrome #ehlersdanlos #eds #ehlersdanlossyndrome 3d

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battlestobeat So today is much better than the past few days. It's still very stressful with my parents not understanding me and losing my friend but I have 2 of my good friends over today with flowers, pizza, chocolate and films ️ They know me so well and are always here for me, I have put on the pain relief patch today but don't know how long until it takes affect coz I'm still in lots of pain and had paracetamol already, can I have tramadol too? The doctor didn't say not to have it. #meds #eds #elhersdanlos #elhersdanlossyndrome #pain #painmeds #painrelief #seizures #spoonie #doctor #dislocated #dislocations #health #hypermobile #hypermobility #headinjury #medication #friends #fits #films #nonepilepticseizures #spoonielife #zebrawarrior #edswarrior #HMS #joints #jhm #shoulderdislocation #kneedislocation #subluxation 3d

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ehlersdanlosuk Photo credit to @elspethvanderhole
Have you ordered your EDS UK tshirt ready for May Awareness Month?
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ehlersdanlosuk We are continuously updating our friendly specialist database and would love to hear from you. If you have seen a doctor, physiotherapist, OT, nurse, or any other medical professional who is knowledgeable about EDS, and you would like to recommend them to others in the community, please email their details (name, speciality, hospital) to helpline@ehlers-danlos.org 3d

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chronic_health Had to snap a pic of my favourite stockings that I refuse to throw out, even though there are holes and ladders all over them.In other news, I think my test at uni yesterday went well.🏼I am so proud of myself for that because I struggle with statistics so much and it has been so very, very hard to even get to this point. I might be going slower than everyone else, but my illnesses are not going to stop me.🏼🏼 3d

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mobiletoybox So my necklace from #thesilverzebraproject came today and I love it And such a good cause too as half the money goes to #HMSA. I have #jointhypermobilitysyndrome which I struggle with every day so I was more than happy about where my money was going! And the necklace came with an adorable little card too! Definitely go give @silverzebraproject a follow! #spoonie #spoonies #jewelry #zebra #necklace #necklaces #jhs #hypermobilitysyndrome #hypermobile #hypermobility 3d

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