Page 1 of 2 [ 18 posts ]  Go to page 1, 2  Next

lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

21 Dec 2021, 3:12 am

Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.



Earthbound_Alien
Veteran
Veteran

Joined: 30 Jul 2017
Gender: Female
Posts: 1,179
Location: UK

21 Dec 2021, 4:04 am

lvpin wrote:
Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.


I'm so sorry sweetie

if I could make it better for you I would



Earthbound_Alien
Veteran
Veteran

Joined: 30 Jul 2017
Gender: Female
Posts: 1,179
Location: UK

21 Dec 2021, 4:05 am

I really would ...



Flown
Veteran
Veteran

User avatar

Joined: 19 Sep 2016
Gender: Non-binary
Posts: 2,044
Location: Ƹ̵̡Ӝ̵̨̄Ʒ

21 Dec 2021, 6:52 am

lvpin wrote:
Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.

In which country do you live? I can direct you to resources if you are interested.

I have a hypermobility spectrum disorder (along with multiple comorbidities), and my diagnosis did nothing in getting me medical coverage for braces or mobility devices. I have to buy most everything out of pocket. It is a constant struggle, and I'm sorry that you are going through this as well.


_________________
ૂི•̮͡• ૂ ྀ


lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

21 Dec 2021, 4:48 pm

Earthbound_Alien wrote:
lvpin wrote:
Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.


I'm so sorry sweetie

if I could make it better for you I would


Your compassion means a lot, I kind fo teared up reading this so thank you. Thank you so much :)



lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

21 Dec 2021, 4:49 pm

Flown wrote:
lvpin wrote:
Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.

In which country do you live? I can direct you to resources if you are interested.

I have a hypermobility spectrum disorder (along with multiple comorbidities), and my diagnosis did nothing in getting me medical coverage for braces or mobility devices. I have to buy most everything out of pocket. It is a constant struggle, and I'm sorry that you are going through this as well.


I live in the UK so we get a lot of the stuff for free. I wouldn't be opposed to any more help though! Also thank you for your sympathy, it is tiring so it is nice to have understanding. I fell I have to hide my pain from others.



Dillogic
Veteran
Veteran

User avatar

Joined: 24 Nov 2011
Gender: Male
Posts: 9,339

21 Dec 2021, 6:08 pm

I think the goal shouldn't be pain free (I don't think such a thing is possible outside of the lucky), but rather pain tolerable, as that's the more realistic outlook.

You can get along with it, and besides specific physical aids, there's usually some safe enough medication that can take some of the edge off depending on the cause. Mental illness can often exacerbate it, which is something to always be aware of. Those with autism can have altered pain tolerance too, where they may find different types of pain more annoying than others. I'm not taking it lightly here, as I too have things that cause chronic pain (the day to day trigeminal neuralgia can be a bother, along with other nerves/organs/bones that have been damaged via physical trauma), and you can carry it and get by, and I'd be no stronger than you or anyone else in the end.

Distraction works all the same when awake as it does on the mental stuff.

Hopefully you find relief.



blazingstar
Veteran
Veteran

User avatar

Joined: 19 Nov 2017
Age: 70
Gender: Female
Posts: 6,234

21 Dec 2021, 8:15 pm

I am so sorry you are in so much pain, my dear.

It makes it so hard to live any kind of a decent life with ongoing pain.

In this country, we have "ace bandages" or "elastic bandages;" strips of elasticized cloth which can wrap around the joint, easing some of the pain. That's what I have used, for knees and for wrists.

Hugs. :heart:


_________________
The river is the melody
And sky is the refrain
- Gordon Lightfoot


Flown
Veteran
Veteran

User avatar

Joined: 19 Sep 2016
Gender: Non-binary
Posts: 2,044
Location: Ƹ̵̡Ӝ̵̨̄Ʒ

22 Dec 2021, 6:11 am

lvpin wrote:
I live in the UK so we get a lot of the stuff for free. I wouldn't be opposed to any more help though! Also thank you for your sympathy, it is tiring so it is nice to have understanding. I fell I have to hide my pain from others.


No problem at all. It absolutely is tiring. I've had pain since my early twenties, and it (of course) has worsened/progressed. I wasn't diagnosed with HSD until 2020, and I may try to get an hEDS assessment in the future (in hopes of being taken even slightly more seriously). I think my comorbid conditions (like dysautonomia) are probably just as disruptive as the actual pain. Do you have any other health issues? What do you have the most issues with?

Also, I'm glad that you live in the UK! Phew! Here in the US, we get zero support. Most doctors have no idea what I'm talking about when I bring up my conditions.

My favorite resource is probably the Ehlers--Danlos Society. There is a plethora of information/resources on their website!
https://www.ehlers-danlos.com/ehlers-danlos-info/
https://www.ehlers-danlos.com/what-is-hsd/

There is also a directory for healthcare professionals who specialise in EDS/hEDS/HSD here:
https://www.ehlers-danlos.com/healthcar ... ectory-uk/

Support groups in the UK (they may have online support if you aren't into group settings like me haha):
https://www.ehlers-danlos.org/support/support-groups/

Some Facebook groups:
https://www.facebook.com/groups/927293363990360
https://www.facebook.com/groups/651390228597568

As for what helps me the most, I would say self care and physical therapy. Physical therapists are amazing and know this condition more than ANY doctor. They can give you the tools necessary to function on a day to day basis! I haven't been to a PT in over a year, and my self-care is slacking, and I've definitely been suffering more as of late. In the past, I have actually had to force doctors to send me to physical therapists as they never took my pain seriously (because apparently being "bendy" is harmless! *sarcasm*)


_________________
ૂི•̮͡• ૂ ྀ


HighLlama
Veteran
Veteran

User avatar

Joined: 12 Apr 2015
Age: 40
Gender: Male
Posts: 8,017

22 Dec 2021, 6:17 am

lvpin wrote:
Tryting to get a diagnosis of hypermobility so I can get help because I'm in constant pain. Every now and again something slips out of place and I often wake up because of the pain and just cry because I'm so tired. I'm struggling to keep up any job too as I keep on waking up and having days where I struggle to move because I accidentally overexerted myself the day before. It's so tiring. When I was younger, I used to burn myself as it would numb the area that hurt and I could sleep. And that's just one of a few medical conditions I have. I'm hoping that they can help me get thing like braces to stop over extension and those help. I got close to being pain free once after doing strengthening yoga every day but it wasn't sustainable as I am mentally ill and don't have unlimited time. Trying to build in cycling and get access to the lift in my building. Hopeful but also exhausted of not being able to live life.


I'm very sorry you're experiencing this daily nightmare. I can relate, at least to a point. I've had chronic daily pains for about 15 years now, due to the stress of masking and having a full-time job. Tightened muscles which are deeply uncomfortable. It's awful, especially as most people think nothing bothers me. They have no idea the pain I'm in at any given moment.

I hope you are released from this torment and can live happily again.



blueroses
Veteran
Veteran

User avatar

Joined: 10 Feb 2007
Age: 41
Gender: Female
Posts: 2,160
Location: Lancaster, PA

26 Dec 2021, 4:05 pm

So sorry you're going through this, OP. I was just recently diagnosed with hypermobility spectrum disorder and can empathize. It's challenging enough to have to deal with chronic pain, but dealing with medical professionals who don't understand or take your level of pain seriously just sort of adds insult to injury, doesn't it? I wish had solutions to offer, instead of just empathy, but you are not alone.



lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

26 Dec 2021, 10:42 pm

Flown wrote:
lvpin wrote:
I live in the UK so we get a lot of the stuff for free. I wouldn't be opposed to any more help though! Also thank you for your sympathy, it is tiring so it is nice to have understanding. I fell I have to hide my pain from others.


No problem at all. It absolutely is tiring. I've had pain since my early twenties, and it (of course) has worsened/progressed. I wasn't diagnosed with HSD until 2020, and I may try to get an hEDS assessment in the future (in hopes of being taken even slightly more seriously). I think my comorbid conditions (like dysautonomia) are probably just as disruptive as the actual pain. Do you have any other health issues? What do you have the most issues with?

Also, I'm glad that you live in the UK! Phew! Here in the US, we get zero support. Most doctors have no idea what I'm talking about when I bring up my conditions.

My favorite resource is probably the Ehlers--Danlos Society. There is a plethora of information/resources on their website!
https://www.ehlers-danlos.com/ehlers-danlos-info/
https://www.ehlers-danlos.com/what-is-hsd/

There is also a directory for healthcare professionals who specialise in EDS/hEDS/HSD here:
https://www.ehlers-danlos.com/healthcar ... ectory-uk/

Support groups in the UK (they may have online support if you aren't into group settings like me haha):
https://www.ehlers-danlos.org/support/support-groups/

Some Facebook groups:
https://www.facebook.com/groups/927293363990360
https://www.facebook.com/groups/651390228597568

As for what helps me the most, I would say self care and physical therapy. Physical therapists are amazing and know this condition more than ANY doctor. They can give you the tools necessary to function on a day to day basis! I haven't been to a PT in over a year, and my self-care is slacking, and I've definitely been suffering more as of late. In the past, I have actually had to force doctors to send me to physical therapists as they never took my pain seriously (because apparently being "bendy" is harmless! *sarcasm*)


Thank you so much! I really appreciate it.

Also a big thank you to everyone else who has responded : )



lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

26 Dec 2021, 10:45 pm

blueroses wrote:
So sorry you're going through this, OP. I was just recently diagnosed with hypermobility spectrum disorder and can empathize. It's challenging enough to have to deal with chronic pain, but dealing with medical professionals who don't understand or take your level of pain seriously just sort of adds insult to injury, doesn't it? I wish had solutions to offer, instead of just empathy, but you are not alone.


I'm sorry you are dealing with that pain too and yes 100%. I guess in my case I'm "lucky" in that the fact that I have to crawl around sometimes to cope is a very obvious sign of how bad it is. Thank you for your sympathy though. It means a lot from others who can relate.



blueroses
Veteran
Veteran

User avatar

Joined: 10 Feb 2007
Age: 41
Gender: Female
Posts: 2,160
Location: Lancaster, PA

01 Jan 2022, 9:02 pm

Have any of the bendy, hypermobile folks on this thread had any success using braces? I ask in case it might help the OP and also for myself.

I have been having a bad flare that seems to be going on forever and was considering trying ones for my knees. I don't want to totally hijack this thread, so please PM if you have any suggestions for specific types or brands to try. I'd be paying out of pocket, so it would be awesome not to have to go through a lot of expensive trial and error.



Jakki
Veteran
Veteran

User avatar

Joined: 21 Sep 2019
Gender: Female
Posts: 10,120
Location: Outter Quadrant

01 Jan 2022, 9:29 pm

i understand this constant pain thing but i cannot get a doctor to consider the fact. but this hypermobile thing is unfamiliar to to me . i find lots of my joints give me unpredictably seem to go out . knee too. spinal cord aswell . but it seems that i am flexible except when these things start going out . and stay in a constant state of hurt . Have used a chiropractor quit often . Which gives me much relief . but there are times when i feel no pain , if i am settled and not moving . And things are just right . What is this bendy thing please?


_________________
Diagnosed hfa
Loves velcro,
Quote:
where ever you go ,there you are


lvpin
Veteran
Veteran

User avatar

Joined: 26 Oct 2018
Gender: Female
Posts: 658

02 Jan 2022, 7:12 am

blueroses wrote:
Have any of the bendy, hypermobile folks on this thread had any success using braces? I ask in case it might help the OP and also for myself.

I have been having a bad flare that seems to be going on forever and was considering trying ones for my knees. I don't want to totally hijack this thread, so please PM if you have any suggestions for specific types or brands to try. I'd be paying out of pocket, so it would be awesome not to have to go through a lot of expensive trial and error.


Don't worry I don't see it as hijacking and it is of interest to me too. I got told I hyper extend while I'm walking so I think I probably do damage with every step.