View Full Version : can I just get a @#$%^ break please? a NEW diagnosis


agirlandherdogs
04-22-14, 06:55 PM
a diagnosis totally unrelated to ADHD ... I thought living with ADHD was bad. I've always had joint issues and had chronic pain. I've been talking with my doctor about moving forward with some surgeries to get some of the pain under control. I was putting my sweatshirt on at the end of our last appointment and slipped my thumb through the thumb-hole. She noticed that I did something odd with my thumb. Yes, I'm double jointed. She did a brief exam and made a referral to Medical Genetics. Today I was diagnosed with Ehlers-Danlos Syndrome. It is a genetic disease that lies within the connective tissue.

this means that the pain I have will not change, it can not be fixed, it will only get worse. It may kill me (literally)! I will be disabled, physically handicapped soon. This is very rare so there is no money towards research or treatment. There is no cure. If it becomes vascular, it could affect my heart and my bowels.

I thought, a surgery would be the answer... rehab and get back on with leading my active lifestyle that I want to live.

So I sit in pain, with a mind that is out of control ... could it be worse?
I don't even want to take my ADHD meds because then I actually want to get up and do things but the pain is too much ... SO what's the alternative, rot?

39 and I feel like I've lived my life ...

Drogheda
04-22-14, 07:27 PM
would anything like gabapentine(sp) or the other version of it help?

maybee try going to a state or county where pot is legal and trying that.

I'm so sorry:(

Lunacie
04-22-14, 07:39 PM
:grouphug: Sorry to hear about the new complication.

However, it's awesome that the doctor picked up on that little clue and sent you for a diagnosis.

Twiggy
04-22-14, 07:44 PM
I second the medical marijuana option. It might help in the long run.

Ganjin
04-22-14, 07:51 PM
Wow, really sorry to that. I looked it up just now, had never heard of it. It looks like it's manageable condition, but I know that the initial diagnosis of something like this can be devastating.

I too am impressed your doc spotted that subtle cue.

mrs. dobbs
04-24-14, 05:11 AM
:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

Greyhound1
04-24-14, 10:47 PM
a diagnosis totally unrelated to ADHD ... I thought living with ADHD was bad. I've always had joint issues and had chronic pain. I've been talking with my doctor about moving forward with some surgeries to get some of the pain under control. I was putting my sweatshirt on at the end of our last appointment and slipped my thumb through the thumb-hole. She noticed that I did something odd with my thumb. Yes, I'm double jointed. She did a brief exam and made a referral to Medical Genetics. Today I was diagnosed with Ehlers-Danlos Syndrome. It is a genetic disease that lies within the connective tissue.

this means that the pain I have will not change, it can not be fixed, it will only get worse. It may kill me (literally)! I will be disabled, physically handicapped soon. This is very rare so there is no money towards research or treatment. There is no cure. If it becomes vascular, it could affect my heart and my bowels.

I thought, a surgery would be the answer... rehab and get back on with leading my active lifestyle that I want to live.

So I sit in pain, with a mind that is out of control ... could it be worse?
I don't even want to take my ADHD meds because then I actually want to get up and do things but the pain is too much ... SO what's the alternative, rot?

39 and I feel like I've lived my life ...

Thank you for posting your story!
I was diagnosed today with Ehlers Danlos syndrome, mainly due to your post. I read your thread the other day and could relate with everything. I did some further research and was convinced. My Dr. confirmed it today and began running tests to determine subtype. Do you know what type yours is? I am hoping for type III.

agirlandherdogs
04-24-14, 10:54 PM
I have EDS type 3, which if that is what you have there is no test via blood that will confirm that. The other types are able to be confirmed via genetic testing. I've read two books in the last two days about it.

I wish it wasn't true for you, and that you only have hypermobility .. which is possible if you don't have the chronic pain issue ...

Greyhound1
04-24-14, 11:05 PM
I have EDS type 3, which if that is what you have there is no test via blood that will confirm that. The other types are able to be confirmed via genetic testing. I've read two books in the last two days about it.

I wish it wasn't true for you, and that you only have hypermobility .. which is possible if you don't have the chronic pain issue ...

I have so many traits of all the subtypes including chronic joint pain. I have the hyper-mobility in about all small and medium joints. I have the translucent skin that is very flexible. I have had too many sprains to count. I frequently dislocate my knees or hips and toes. The good part of the syndrome is that my skin is velvety smooth. Like a baby's ***.:)

Lunacie
04-24-14, 11:33 PM
(((Greyhound1)))

(((agirlandherdogs)))

Fortune
04-24-14, 11:42 PM
I relate entirely too much.

Much sympathy.

mrs. dobbs
04-25-14, 03:49 AM
((((Greyhound)))) ((((agirlandherdogs)))) ((((fortune))))

Greyhound1
04-25-14, 08:22 AM
I relate entirely too much.

Much sympathy.

Do you also have EDS or a similar syndrome?

Fuzzy12
04-25-14, 08:24 AM
I'm so sorry!!! :(

Fortune
04-25-14, 08:38 AM
Do you also have EDS or a similar syndrome?

I have fibromyalgia and my knees like to subluxate, but I don't think I have EDS. I meant getting new diagnoses, and getting a break from said new diagnoses.

In the past two years, fibro, then hypothyroidism (which was new, as in it was not present a year ago, but was four months ago), and now I have another thing that needs to be evaluated. It's demoralizing.

I am sorry for not being clear - I was mostly just saying I can relate, not looking for support but looking to offer support.

Greyhound1
04-25-14, 08:42 AM
I have fibromyalgia and my knees like to subluxate, but I don't think I have EDS. I meant getting new diagnoses, and getting a break from said new diagnoses.

In the past two years, fibro, then hypothyroidism (which was new, as in it was not present a year ago, but was four months ago), and now I have another thing that needs to be evaluated. It's demoralizing.

I am sorry for not being clear - I was mostly just saying I can relate, not looking for support but looking to offer support.

Thanks for your support. Do you know of any links between EDS and Fibro. My mother has bad Fibro and I was wondering if that could be a genetic link for me. What do you think?

Fortune
04-25-14, 08:46 AM
I really don't know. I'll have to look it up. I know both EDS and FMS have a heritability component (and EDS has an identified genetic component that can be tested for?). I found this:

http://www.healthcentral.com/chronic-pain/c/5949/150323/hypermobility/

Lunacie
04-25-14, 08:47 AM
I have fibromyalgia and my knees like to subluxate, but I don't think I have EDS. I meant getting new diagnoses, and getting a break from said new diagnoses.

In the past two years, fibro, then hypothyroidism (which was new, as in it was not present a year ago, but was four months ago), and now I have another thing that needs to be evaluated. It's demoralizing.

I am sorry for not being clear - I was mostly just saying I can relate, not looking for support but looking to offer support.

BOTH of your knees subluxate? I have one knee that does that and it's a pain in the keister.

I hate having to use a cane to walk, but I guess it beats using a walker or a wheelchair.

I believe my knee problem is due to damage I did to that knee when I was only 19.

What do you think causes your knees to subluxate?

Fortune
04-25-14, 08:54 AM
Yeah, I've had both my left and right knees do it at different times, usually from sitting in an odd position, even if it feels comfortable. It makes walking very difficult and painful.

Once it took so long to stop hurting I thought it'd be stuck that way.

I don't really know what causes it. I never remember to mention it to my doctor.

I also never remember to buy a cane, so I do a lot of leaning on walls and such.

Lunacie
04-25-14, 09:08 AM
Yeah, I've had both my left and right knees do it at different times, usually from sitting in an odd position, even if it feels comfortable. It makes walking very difficult and painful.

Once it took so long to stop hurting I thought it'd be stuck that way.

I don't really know what causes it. I never remember to mention it to my doctor.

I also never remember to buy a cane, so I do a lot of leaning on walls and such.

Well, at least both knees haven't "gone out" at the same time, so far.
That would certainly call for a wheelchair.

I've done more than my share of wall leaning, but mostly because of the arthritis in my lower back and hips.

Sometimes I will go for months without my knee subluxating.
Sometimes it takes weeks for it to return to normal.
Then I'm afraid it will always be stuck that way.

The older I've gotten the worse my knee has gotten.
Of course I re-injured it a few years ago which didn't exactly help.

So this is something you might want to mention to your doctor before you're my age, eh?

My daughter's step-son has knee problems and his doctor has him using athletic tape
(also called kinesiology tape) to see if it helps. He's 19 and also uses a cane to walk.
I'm going to look at the pharmacy today for some of that tape and try it myself.
.

And, sorry to the OP for the slight detour. :giggle:

Fortune
04-25-14, 09:25 AM
Yes, I really need to remember. And to get a mobility aid. It's not just when my knee(s) hurt that I need it. Because fibro by itself is a literal pain.

And god no I don't want both to go out at once.