My daughter, who has EDS and POTS, has constant neck tightness and knots and pain. I have a question about my other daughter, who most likely does not have EDS. She developed neck pain at about age 14, which is the same age my older daughter started showing all her POTS symptoms. This pain never goes away. She has had xrays, MRIs, ultrsounds, chiropractic care and physical therapy…nothing has helped. I am actually starting to wonder if my daughter could have some very mild form of EDS that isn’t that noticable. She has also has some stomach issues and hip issues like my other daughter, but does not have the stretchy skin that her sister does. We don’t have any idea how to help her neck pain. I have a hard time accepting that an otherwise perfectly healthy teenager would have neck pain for no apparent reason. She never had any type of injury. I am intersted to hear your theory Diana .
I have a tractor trailer full of issues and per Dr Francomano my skin is not very stretchy at all. I have had college coaches, doctors, massage therapists, and PT’s tell me though that I have somany knots and so much tension in my muscles, especially neck and back, it’d be easier to massage a door than mt back. My PCP has commented that she can see the muscle tightness in my neck from across the room. I have lived like this for as long as I can remember. I assume there was a time I didn’t live with muscle tightness but I don’t remember it. EDS presents differently in all of us, even in the same family.
I have found the most relief from my current PT who uses cranial sacral massage techniques. I would encourage you to try to find a PT, osteopath, or massage therapist who uses the same who can evaluate your daughter’s body mechanics. The tiniest things can make a huge difference.
I would also encourage you to listen to your gut. Mom’s are usually right.
Hi y’all. Sorry it took me so long to stop in again. I wanted to let you know that we had a new mattress delivered, and my neck now feels fine. Soooo… I would conclude that this not one of my problems. I hope everyone can find some relief as simply as this. : ), even if it is not in this area.
i have this too; the back of my head hurts all the time and i have knots and pain down my neck and shoulders. lately ive been waking up in the middle of the night with headaches all the time. my upright brain mri showed a 3mm herniation which the radiologist and my pcp considered normal but i’m hoping to see an expert. I’m going to try to convince my pcp to prescribe diamox and i’m ordering a neck collar on amazon now.
I have been diagnosed with Chiari 0 Malformation with 3mm herniation. Obviously I don’t fit the 5mm criteria for Type 1. I started taking Diamox and became violently ill. I also had a moment where I ended up driving to McDonald’s to get breakfast but when I got to class I had no recollection of stopping off at McDonald’s. I also have no idea what McDonald’s I went to. I literally felt like I was outside my body for 2 days after only taking one dose.
Is there another alternative drug that has the same or similar effects? We discussed that my herniation is possibly a result of hydrocephalus and the pressure pushing down on my brain.
I have neck pain all the time that radiates to my shoulder blades. I also have issues changing postures. Lying down is comfortable for a little and then the pain comes back. However, when I sit up I feel like I am going to faint. (I do have Neurocardiogenic Syncope but have triggers that I am able to control).
Not sure where to go from here. My doctor does not want me to continue taking Diamox, and I don’t really want to consider decompression surgery just yet.
Hi Jill, This is one of the toughest questions I get asked. IV mannitol can work, but only in a hospital setting, Topamax works a bit, but has more side effects. Lasix works a bit (I actually take Diamox AND Lasix), but again, likely not enough. I have seen someone work around their sulpha allergy by working closely with their allergist and building up very slowly. Dr. Castells in Boston (mast cell specialist) may be able to help, too. She made a protocol for patients with ovarian cancer who react to about the only effective medication there is for it! Thank heavens, with her mind on it, these people can still take the medication. She may be worth a try. She may also be able to give you something to hold off your reaction to it. With the risks of a shunt, etc., I’d highly recommend looking into it.
Big hug, Diana
I’ve had a headache like this everyday for over a year.
I lived like that for years. It is still there to a lesser degree but boy did I feel it come back with a vengeance when I forgot to sleep in the soft collar 2 nights in a row. OUCH! Try a soft collar for sleeping and see if it helps. It made a difference for me. Well worth $14.99.
i have this type of headache and possibly chiari (1 MRI showed 3mm another showed 15mm, so that’s still in debate) I talked to my doctor about increased ICP and trying Diamox. He looked at my eyes (with the light thing) twice and is certain that my optic nerves aren’t swollen and because of that he says it’s highly unlikely that I have intracranial hypertension. Is it still possible to have high ICP without swollen optic nerves?
I am not a doctor but I have been to enough not to trust one opinion. Also, anything is possible. I would google symptoms of inter cranial hypertension, aka external communicating hydrocephalus and see what you come up with. Even your dr said it was not likely, not impossible. Who knows when the last time he read up on this was. My PCP is great but told me I didn’t have the eyes for EDS. I’m guessing she thought I had to have blue sclera. I have grey per the EDS expert, but as with any condition not every patient has every symptom. The same condition can present differently in different patients.
I just wanted to chime in and say that I also have the neck and shoulder pain every day. I almost always have “knots” around my shoulder blades and around my spine. The shooting pain will circle around my ribs into the front and under my breast tissue even. My fiance is required by our “contract” to give me at least one massage a day… for the rest of our lives.
Hi Dr. Diana.
I have hypermobility EDS so I know that paid for sure. I wake up with it and go to bed with it. I had c6&c7; fused in 2009 with no relief in that area, although I did regain the feeling and use in my left arm so I wouldn’t say the surgery was a total failure
I’m willing to try about anything at this point!!!
Yes, I have this pain you are speaking of. I also have sore spots on the back of the base of my head (where you are talking about) and if I press on them pain travels down that side of my neck and sometimes into my shoulder (trapezious muscles I believe). Does anyone else have this or know what it is?
I was recently diagnosed with EDS, but I did not have stretchy skin from birth. However, a childhood scar represents typical EDS scarring. So, I believe I have had EDS my entire life, with the stretchy skin being activated (when I was 30) by a prescription drug for a sleeping disorder. I already had a lot of health issues, but suddenly I crashed and I crashed hard. My skin went stretchy, by muscular body turned to mush (even my breasts turned to mush) and I stopped functioning. Anyway, I believe your daughter can still have EDS. I have also suffered from SEVERE neck pain for over 20 years.
I’ve been diagnosed with DJD of the neck, MVPS/Dysautonomia with severe mitral regurg. PD &
Monoclonal gammopathy I have neck pain almost constantly, but mostly at night and often involves my neck muscles as well. I have anaphylactic reactions to; ALL contrast dye, Prednisone and Sulfa drugs & I also cannot tolerate local anesthesia with the reaction being extreme nausea. I also have very uncomfortable reactions to Nitrostat. I also cannot tolerate many foods and if I do eat them, the end result is nausea and extreme diarrhea & also I forgot to mention, I had my gallbladder removed in 2004. Does any of this make sense to you as I also have severe brain fog and if it does, any suggestions? Thanks & God Bless!
My name is Mary Clare and I am 20 years old. I have been diagnosed with EDS for about 3 years now. I am constantly in pain and have recently been experiencing severe migraines. I have had the neck pain that you are describing for quite some time now. I went to see Dr. Durrani in Cincinnati, Ohio. He put me in a neck collar and would like to do a C1 - C2 fusion. I was hoping to get your opinion on this.