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Sick of hurting

Feb 28, 2015 2:28 PM

Have recently been told I'm hypermobil, this doesn't explain all the pain I get.
Today my head hurts due to a sore neck, my right elbow hurts, my left hip ( which is stuffed, torn cartilidge) , left knee and left foot.
There are a few other minors not worth thinking about.
I guess what my question is is : what is my nz dr overlooking? What can I research and take info to him if it matches me?

Also pain relief, I'm allergic to the morphine family and amitriptyline made me unopperable.
I need help.

Feb 28, 2015 3:46 PM

With the symptoms you've shared it could be quite difficult to be make any suggestions on what your Dr is missing. Other things to think about are what else has been going on with your body, even if you think it isn't relevant? How long has it been going on? Have symptoms changed? What about changes in sleep, diet etc? How about personal or work life? Take some time to think about your "big picture" and I'm sure there will be other clues which will help narrow down what you may be suffering with.

Regarding Amitriptyline, there are other alternatives depending on the reason they are prescribed. There are also other effective pain killers other than morphine based drugs, again depending on the cause of your pain.

Always here to listen and help, and hope you start to find causes for the way you feel soon

Feb 28, 2015 7:14 PM

I'm new here, but not new to pain from hyper mobility. May I suggest you look into Eherlos Danlos Syndrome hypermobilit type. I was diagnosed with it a year ago. Hyper mobility can cause awful pain, much like you have described. I have also read about many sufferers have an extensive number of allergies to medications. I have such an extensive list of problems I could never list them all here. Hope you find the answers you seek.

Feb 28, 2015 9:16 PM


I'm new here too.
I've just looked that up. Eds does sound similar to what I'm dealing with, except for the stretch skin.
I've tried so many pain relief meds that just don't work. My dr doesn't know what to do next. My only relief is from a tens machine.

I've had no exact injury.
Struggled since I was 12 yrs old with neck pain and it's just gone from there.
In my 20's I had my 2nd child which started my hip issues, I cracked the cartilidge getting up off the couch! I prolapsed my S1L5 gardening in my 30's and now everything from my fingers to my toes hurt (even my eyes) I feel like a hypochondriac.

Just felt Drs diagnosis isn't complete or isn't corect.
I'm going back to the surgical team on nz Thursday but don't expect anything to come from that.

Feb 28, 2015 9:37 PM

I don't have the stretchy skin either, but my skin is soft and velvety.

I sprained my knee last fall putting cinnamon rolls in the oven, then I dislocated my ankle walking down the hall in December. I'm just starting to heal from that one. I started dislocating my shoulders when I was a toddler. My knee first dislocated in my late teens. I'm now in my forties and feel like I'm in my sixties. I whish I had known about hEDS (EDS III) when I was young. I've also read that if you do have EDS surgery should be a last resort as sometimes we just don't heal well. I'm lucky in that the only surgeries I've had are an angiogram and a spinal tap. Both were before I had even heard of EDS.

I LOVED the TENS unit in PT. I kept asking the girls if they would miss it if I snuck it out of the office. They assured me they would. LOL Headache is getting the best of me now, time for bed. Good luck with your appointment.

Mar 01, 2015 10:08 AM

Hello & welcome all you newcomers; burgandyred, Madbynature, and Scaryann. I have some hyper mobile joints, mostly the knees & fingers, but not the ehler danlos. I've dislocated both shoulders but mostly suffer with bursitis there. I use heat & ice, TENS, & Voltaren gel a lot. I also get cortisone shots when it gets real bad. I hope you can get some relief & diagnosis.

Mar 01, 2015 1:06 PM

I second Flappy, welcome to you all! Interesting EDS was brought up. I recently came across it and have read up on it. Says it is often misdiagnosed as fibromyalgia as many of the symptoms are similar, especially to the type 3/Hypermobility. I actually think that may be one of my issues and plan on asking my rheumatologist about it next dr visit. It would certainly explain a lot. Hate the diagnosis of fibro, it seems many doctors stop trying to look for a cause or origin of your symptoms when you are diagnosed with fibro. Seems too convenient. The not knowing drives me crazy.

Mar 01, 2015 6:43 PM

Nice to meet u all :-)

I agree it's the not knowing that is driving me mad, I know there's more to it than I've been told. The also tried to label me with fibro but I wouldn't accept that. I've been asking a few more questions online and in chat rooms than I've done in the past, I need ideas and answers. But feel "eds3" is the closest I've found yet.

I couldn't survive without my TENS machine, diclofinac and my baking soda drinks.
I think I get gout too

Mar 01, 2015 6:59 PM

Welcome to our group all newbies. As far as I know I don't have eds3. I am leaning toward CIS I'm going to call the nmss in Houston tomorrow and talk to someone. I think that may be what's causing all of these episode's that I have had. The Dr is stumped he can't figure it out so I intend to ask him. They have ruled out stroke every time thank God.

Mar 01, 2015 8:34 PM

Hi Everyone, I have fibro, degenerative disc, and nerve damage, do anyone suffer with pain in shoulder, knees, elbow, ankles, bottom of feets, wrists, neck, tingling, numbness, and headaches Oooh my God everyday.

Mar 01, 2015 8:36 PM

I'm going to have surgery 3/12 L-4-5 pray for me my family

Mar 01, 2015 8:38 PM

Anyone had surgery on lower back

Mar 01, 2015 8:42 PM

Praying for you Shady! My brother in law had back surgery and his first 2 years were hard. But after that he went back to his job, moving houses & buildings. Good luck & God bless!

Mar 01, 2015 8:57 PM

I have had two low back surgeries. In 09 and again 3 years later both by Veteran Affairs doctors. Not sure if my doctors got their licensing through General Mills or Kellogs cereal box.

Mar 01, 2015 9:27 PM

Madrob, I can so relate to your comment about the VA doctors. My Dad goes through the VA in Buffalo, NY. I still can't believe some of the stuff they have put him through! They went years before they would Even do an MRI on his shoulder. When they finally did they did surgery within a month it was so bad.

Shady, I have pain in every area you mentioned. Some days are worse than others, but getting doctors to believe me is another story. They seem to think that because I am only 44 I can not be in pain there.

Thanks for the welcome to the group.

Mar 02, 2015 6:24 AM

Madrob, your comment on licensing is funny, and it could fit many non-VA docs too! Sorry you have had a bad experience with them.

Scaryann, they think anyone under 60 is faking their pain. I'm 53 and I'm researching new PCPs to replace mine.

Mar 02, 2015 7:58 AM

madrob funny thing is i think there is a Kellog's Hospital in Battle Creek, MI lol

Mar 02, 2015 9:52 AM

Shady and everyone I have Syringomyelia, Fibro, Arthritis, degenerative disk disease,herniated disk L4S1,I had an anteriordiskectomy on 5,6, and 7 in 2005 my pain level went down from a 10 to a 8 in my neck . But it's back up to a 10, I'm probably going to have to have more surgery on my neck.

Mar 09, 2015 4:08 AM

Hello weezie12,
The only thing that they base actually got on the Dx table for me atm is syringomyelia but they claim that it would not cause "this level of pain" and many of my other symptoms. I know i have an Undisipated Central Canal (currently t Dx for possible syringomyelia) and have to have an MRI in 2 years (already been over 1) to see if it's growing

Mar 09, 2015 8:43 AM

My dad had lower back surgery and after recovery did well. It was having his neck fused that bothered him everyday. My grandma had 2 back surgery within a few weeks. She must have been late 60 early 70. Anyway the first one they were going to fix a disc but when they got in there realized her osteoporosis was causing her spine to collapse. They went back in and put a screen around her spine and filled it with cadaver bone and built her a new one. After recovery she did well. It is amazing what they can do now days.

Mar 13, 2015 9:42 AM

Anyone try this med Savella for there Fibro???

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