The Continuing Recovery Journal

Hello friends,
So as some of you noticed, I have a physical disability that has been not diagnosed.

A high possibility for diagnosis would be Ehlers-Danlos syndrome, but the doctors are not adamant on diagnosing me because they have little to no knowledge about this disease.
I dislocate and sublux my joints approx. 10-20 times a day, my skin is fragile and tears apart, and I live on 24-hour extreme level of pain.

So I know that I may never recover. I would just have a ‘continuing recovery’.
As of 2018, I am diagnosed with fibromyalgia as a catch-all term.
So this little place of mine would be a journal of me keeping track of my never-ending steps of recovery.
Please feel free to ask me questions if you would like. Your input is highly welcome.

Thanks everyone for your support!

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Morning of Mar. 15
Pain level: 15/10
My legs feel like someone has crushed with a hammer. My doctors don’t want to look into it.
My appointment is in 13 days. I honestly don’t know how I can last with this pain.

May i ask how old you are?

22 years old. 1515

ah-h-h poor guy…!
its a terrible time for pain meds, you should be on a patch or something. big tough guy… i’m sorry man, wish i could help. my wife has a terrible back and is always an 8-10. she has no help. talk to the man upstairs. sorry hate to go!

I am not sure what you are trying to say, but I appreciate your support! I’m a girl, by the way- and I am so sorry that your wife has trouble because of back pain too. I sincerely hope she will get better soon! Pain is such an awful thing to have.

thank you. i appreciate your support too. boy i really did think you were a guy. it was just encouragement in your struggle, trying to care. i’m sorry for you. like my wife i can never do anything to really help. just try to make her burden lighter.
i feel for you. no one should have to live that way. that is a long wait to see your doc, i hope he or she helps. its not hopeless because of JC. but i hope you do better soon. He loves the down trodden and gives hope to the world.

I am so sorry you are in so much pain, @anon10648258. Do you know if exercise may or may not be of help to you? Has your doctor talked to you about it? Or, is that out of the question? Are you on any pain medications? Do they seem to help? Or no?

I appreciate your support, thank you so much! I have a possible genetic disorder that makes my joints prone to dislocation/subluxation. So I have to be really careful when exercising. I like to exercise, especially taking my dogs out for a walk. My dogs love to go out to the mountains, so I’ve been doing that since I was able to somewhat walk.
I’m on an extremely strong pain medicine for severe pain called Targin (oxycodone). It’s a strong medication that only the hospital must approve of in Korea. As a result, we can only get it inside my hospital when my doctor sends the prescription to the outpatient hospital pharmacy. It helps my pain somewhat, but recently my pain has been unbearable and excruciating to the point that made me feel like it’s better to end my life.
I’m hanging in there. Not sure how long I can take this pain, but still fighting…

Pain Update:
Feeling a little bit better, but not really much of an improvement.
A good news is that I’m seeing a pain management specialist soon! But this appointment is in April and I have to wait so long to see this doctor. Until then, the geneticist will help me with my terrible genes (literally).
I’m interested to see what genes my parents have, and if they have any genes that might match mine. If they do have matching genes, I inherited from them; if I have it, I’m either a carrier or the first person in my family to have the disease.

Does the pain manifest only when you move? Or is it constant, even if you’re laying still?
Also, I don’t know if it’s weaker than the pain meds you’re on, but have you tried morphine? My aunt was taking it when she had pancreatic cancer and I heard it was a strong one

im sorry to hear of your suffering, I hope you can find a med that will help you @anon10648258

If your doctor can’t help you with your pain, can you see another doctor? Constant pain is really tough on the psyche. My husband has constant severe pain. It’s so awful!

@AccreditedPsych We probably…tried so many medications for my pain. My doctor told me about it, but she didn’t want to use it at that time because of my seizures. I should ask, though. I just have to be super careful with my body due to my weakened immune system.
@karl
Thank you. I seriously hope that I can find something that will relieve my pain.
@CoCo
From what I know, my disease is said to be chronic. So, I will possibly have this for the rest or my life. But it’s always good to hope…
I have seen at least 7 doctors, and about 5 of them dismissed me because I didn’t “look sick”. The geneticist is probably the only genuine doctor amongst all doctors that I have seen. He cares about my pain, although he is super hard to talk to because he sees so many genetic disease patients. The sad thing is, the doctors don’t really care about my pain, nor they try to help me to deal with it. So far, I’ve been at home tending my pain and my sickness.
I hope that your husband recovers from his pain! Pain is so awful.

gosh, that sounds terrible.

I get bad head pain, but take nothing for it.

They should always ask you to rate your pain that day on a scale of 1 to 10.

that’s what doctors do.

My geneticist asked me about the pain scale. He sees mostly pediatric patients, so he has colourful pictures about the pain scale on his desk. He also has a pretty line on the floor and a ‘touch the star’ thing on the wall to measure my unstable gait (a word for how I walk).
It makes me to feel like a child again.
I hope your headache/head pain gets better! I get terrible migraines. My mother has them too and we often wonder if it is genetic.
I would say from my 2 year-long experience with severe pain is to know your body’s signs. When you feel pain, make sure to take medicine or to rest. And always remember that it’s okay to listen to your body and love yourself, no matter what! :slight_smile:

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My husband broke his spine in 4 places from neck to low back and it damaged his nerves 8 years ago. He’ll be in pain all his life :frowning:

I’m so sorry to hear that! That sounds so painful. Have you seen a pain specialist about his pain?

May I ask what his diagnosis is? My family is learning about CRPS and usually this disease stems from an injury. I had a flu shot 3 years ago, which started all of this pain issue. A simple needle going through my arm may have caused this pain. It’s so absurd to think of it…

He has a pain specialist. He has multiple diagnoses with his condition

I think I have a friend with this disease. he can be walking, with cane , and his knee will pop out or his shoulder and he winces terribly. He walks slow. He has had it for a few years, He is about 50 years old and disabled- can’t work but he is a singer. I think he is on medication and doesn’t get out much. His mental health is fine though.