If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Hi, my name is clim_274!

clim_274 Community member Posts: 1 Listener
I have had pain since i was nine years old.  I didnt know i had EDS but i broke every finger in both hands and o was doubled jointed. Then i suffered from boils just o the edge of my eyelids and the bottom part of the eye skin. I had many illnesses sprains etc and my parents felt fed up about all my problems. Taking me to the doctorsetc. Then at 13, 14 yrs old had severe back pain again parents didnt believe how painful.ended up being scoliosis. Then i became a woman with extremely painful time of the month and was told it was normal but later i was diagnosed with grade 3 - 4 endometriosis and it would be near impossible to have children. Now i am 47 years old and i have had 17 operations. I have two autoimmune conditions, one connective tissue disorder, severed acl in both knees, herniated l4 and l5, fibromyalgia, cfs/me, angioedema, ibs, gord, diabetes, gastritis, hyperLipoedema, malrotation colon and the caecum, Tietze disease(similar to costochondritis) migraines if severe enough i have stoke like symptoms when the migraines have finished. Dissociative seizures, thymus cyst, liver lesion, lumbar radiculopathy, spinal stenosis, disc degerated disease, empty sella syndrome and non-alcoholic fatty liver disease. 
This year they finally believed me about my bladder problems. So i now finally found out why for the last 20 years why i get guaranteed 1 uti a month, but usually its two. Also the condition they found wrong with my bladder makes me feel all the pain of a severe uti also constantly. So it is either i have a uti or my bladder condition is inflamed which will happen if i have had a uti.     Sicca Sjogren's Syndrome.
I am so tired of the pain.  It is none stop. Its like my conditions are all fighting for the spotlight and when i wake up i will find out what my challenge of the day will be. 
I am so tired of being useless, being in pain constantly and there is no light at the end of the tunnel. For 7 years it has turned my life upside-down. Especially my husband's and my 4 children.  I think, no i know they are fed up with me causing the situation. My husband cannot hide his frustration 😤 anymore. When i am 10 in pain he just gets angry at me. Cos that means we might need to go the hospital and he hates hates the hospital. I think he is suffering from PTSD. And when i am very ill its like a trigger. Today has been sooo 👎 bad. Back, ibs, bladder, hands, inner legs from the groin downwards. Everytime i want to stand i have the severe urgency to go to the toilet even though i dont need to go. 
I have had enough. I have no voice in my family anymore nobody listens to me. They pretend to listen just to make me feel listened to. But i know the truth.
I have no purpose.  My husband cant cope when i am really ill. With the anger he was rough with me. By which i mean while having an anaphylaxis shock my throat started to close up soi tried my best to ask for water. When he got the water and gave it to me the plastic bottle hit my tooth and the water just didnt go in my mouth but down my chin and shoulders and i choked a bit. He apologised the morning after when i told him he treated me quite roughly yesterday. But  he felt that i could of avoided the episode. Then that evening my third child attempted at an overdose and he took her to the hospital. But i am not really allowed to get involved cos i have been branded as the one who says the wrong thing and if i have any opinion of the situation i will be shut down. 
So tell me what kind of life am i living and why. I have a body which is constantly in pain, someone where no one wants to listen to. And i am sure, yes a few will miss me if i disappeared but then i would be forgotten. So why am i here, what is the point in suffering like this anymore. I just want to click my fingers and just disappear!!! I have reached the end... can someone please help me cos all i see is darkness.


  • Sandy_123
    Sandy_123 Scope Member Posts: 52,417 Disability Gamechanger
    Hi @clim_274 welcome to the forum. Here there will always be someone to listen to you and read what you type. You have a lot of conditions to deal with and over a long time. I can see why you feel so frustrated. 
    Firstly I will tag @charieds hope she doesn't mind, but she offer you some advice better on eds. 
    Have you considered speaking to your dr about how you feel mentally.  Some help line links below

    Have you spoken to your husband how you feel?
    It might be worth having the gp look at your medications too for a review.

  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
    Hi @clim_274 - & welcome to the community from me also ( & for @Sandy_123   tagging me). I also have EDS (the hypermobile type of Ehlers-Danlos Syndrome).
    I don't think Drs always understand that EDS can affect more than your joints & muscles. Have you seen the GP's toolkit here? : https://gptoolkit.ehlers-danlos.org/
    Your mention of 'empty sella syndrome' got me wondering if you know that Chiari 1 Malformation can be associated in some of us with EDS? https://healthonecares.com/locations/colorado-chiari-institute/chiari-malformation-related-conditions.dot#empty
    I presume empty sella symdrome was confirmed by MRI, but was any mention made (if not of Chiari 1 Malformation) then 'less than 5mm tonsillar herniation,' 'low lying (cerebellar) tonsils,' 'tonsillar ectopia,' 'cerebellar ptosis,'or 'hindbrain herniation?' Were you given a reason as to why you have this (tho it can be just an incidental finding)?
    There does also seem to be a definite link that many with fibromyalgia often have EDS I've learnt from medical research & talking to another physio in a recent webinar about fibro.
    I'm so sorry for all you're going through. I wonder if it would help your husband understand more by looking at the EDS Support website: https://www.ehlers-danlos.org/  to appreciate how it affects you, & how complex it can be.
    Chronic pain can be managed, & often it's a combination of things that may work. I've been looking into this again more recently & following the webinar on fibro, then another about joint hypermobility & pain, & feel this is also a helpful website: http://resources.livewellwithpain.co.uk/ten-footsteps/well-done/
    Hope some of this helps, & always willing to chat further. My best wishes. :)
  • Sandy_123
    Sandy_123 Scope Member Posts: 52,417 Disability Gamechanger
    Thankyou @chiarieds your knowledge on this is really advanced 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,503 Disability Gamechanger
    Welcome to the community @clim_274 :) I can see that you've already been receiving some advice and support from our friendly members, which I hope has been helpful.

    I've sent you an email from community@scope.org.uk to see how we can support you, so please do keep an eye out for that if you can.
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
Complete our feedback form and tell us how we can make the community better.