Even if the only thing you can do today is not beat yourself up for being better , or not make yourself feel guilty for not doing more , you will have achieved a great and beautiful thing.
Being Kind to Yourself is the greatest gift you can give , and the best gift your Mind will ever remember receiving.
dear B ive read your bio and whilst I can relate I am undiagnosed, my dear daughter however is only 17 and has been struggling for years and fobbed off at every angle until of late. she's suffered much the past few years and only just being looked into but its painfully slow and bit by bit. she is under diagnosis now, was found to be 7 on Brighton score though not all tested yet so maybe higher, and not fitting criteria therefore has been told hyper mobile. she clicks like crazy daily was told by doctor couple of years ago he though arthritis but after a blood test was told no, she's had skin sensitivity problems, Gerd , joint problems, behavioural problems I now fear as with symptoms on flare I feel gca, her latest scans of ankles knees and wrists show much fluid ,blood, thickens tendons and bone deformities, fatigue, anxiety depression and I have had all her symptoms over the years and diagnosed fibromyalgia but so fearful now that as we so alike that any missed diagnosis ive had has led to her problems though she suffers more in a different way. would you be open to a private message as im sure you have a full understanding which may help my daughter and could help me support her and id be most grateful though totally also appreciate you may not want this. your words above are what she needs to read and I thankyou 🙏
Absolutely any way I can help.After lots of research and fighting and being pushed from pillar to post with no Consultant willing to take on the responsibility to do my assessment I finally got my EDS confirmed on my medical history by a new GP at age 50!
At first I was misdiagnosed then diagnosed with GJHS.
It had affected me all of my life and has caused early development of various long term conditions.
On the same day my daughter's came straight in and got there diagnosis. My youngest is more severe like myself and also has the cardiac problems but much earlier than I did at just 21 , poor thing. It was for them that I kept on battling to get all my things diagnosed so that they didn't have to go through the stress and gaslighting that I had for decades.
The new GP referred us as a family group to the Genetics Referral Unit ( it costs money which is why all the other doctors try to pass the buck) although it's not necessary to have the genetics done at all it's just for peace of mind when you have certain things in your family history.
I'll help point you in the right direction and prepare you with what to answer if they fob you off or test you incorrectly. Hugs , Bee
so sorry but feel I can relate ive never felt well or right to be honest but certain points and times in life been worse than ever.personally told depression and fibromyalgia many years but over years more heightened problems and now daughter 17 but her feet ankles and knees and wrists affected so badly, falls out of nowhere which then render her useless with much swelling and pain yet no warning she is going to fall just ankles give out. sudden back pain disabling, many headaches and colour vision loss and always been fobbed off too until now damaged. I am 6 years into my journey which is another thing but I as you do not want my young daughter fobbed off. we have had hyper mobility diagnosed so far, have been waiting two years for neuro ophthalmology awaiting heart check, seen rheumatologist ordering mri of wrists though why only wrists and taken more blood. previously told bloods checked and no autoimmune just low iron., anaemic so not an awful lot done and forever waiting , and meantime worry about the damage being done.I also look for my diagnosis trying to see if we are linked with problem or not but pair of us struggling to get any answers. I have suspected myasthenia but I dont know if that or not if is it doesn't answer much else and daughter just waiting for anything other than hyper mobile.
hypermobile and daughter suspecting herself though not diagnosed that she has adhd. she's overweight but not just if at all from food, she's fatigued low anxious, skin sensitive to sun and products and an antibiotic, Gerd, sensitive to touch and stimuli, many headaches migraines, weakness numbness , horribly heavy painful periods, teeth problems, big boobs like me (I dont know if this is relevant)ive noticed smelly strong urine, clumsy, clicks everywhere, you hear her cross the room or doing anything with hands, neck aches. we did tell paediatrician we suspected heds and this is when she classed her hyper mobile but ultrasounds have revealed damage, and thats where we are just waiting for next move and im at a loss as to what to do next. I do fear her eye problems which can get blurry and veiny and personality change with it and gca or something like neuromyelitis. its a guessing game and just want things to move on for answers as she does too.
GJHS?
thankyou so kindly for replying. I wonder if her hyper mobility is part of the rest or coinciding with the rest its a minefield. thankyou 🙏🤗
Before I take some time off 
What have you been doing to stop yourself feeling anxious?
My "To Do List" for today,,,
Love Is The Greatest Gift Of All (by JEG325)
