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I have mostly upper/mid back spasms….to the point were doc. says they caused “adult onset scoliosis” in my thoracic spine, also occasionally in my hands & feet (especially at night) & last 3 toes on both feet are severly permanently turned under.
hello there!
how’s your shoulder/neck/head posture?
and which muscles are you using to try and have good posture/hold your shoulders/neck/head?until I saw an EDS understanding physio who found that I was using the wrong muscles and then worked with me on using the little small core ‘stabilsing’ muscles to hold myself, instead of what I ‘naturally’ did using the big outer ‘movement’ muscles- those big muscles were always hypertight=bringing spasms, perma pins and needles from my shoulder to my fingers and even blood flow probs in my arm
and ‘good posture’ of course wasnt really poss like that- but he also had to first teach me where exactly my shoulders were supposed to sit, they were ‘normally’ mostly out rather than in their sockets-
since then, and as long as I keep up with the exercises at least semi regularly… I dont really have those probs anymore ; )
xxgBearcat…posture? can’t say it’s the best, although I do try to make a conscious effort. I’ve tried gentle exercising/stretching, seems like by the next day though it makes it worse. I also have loss of “lordotic curve” my cervical spine is completely straight, which would also explain why maybe I have,or what looks to be like, Chiari 5mm, i think due to my spine being straight it make it easier for the cerebellar tonsils to come down, put pressure on everything, and cause these muscle issues over & over again. You know what’s strange though….. when this outrageous pain/swelling is in my neck/shoulders…I have very little autonomic stuff goin on, then like clockwork doc gives me prednisone, which i believe reduces the swelling & within 2-3 days the autonomic symptoms come back with a vengence!!!! I started thinkin maybe(in my case) i could live with this pain,it’s horrible pain BUT, I’d rather be in pain then deal with the autonomic symptoms(I completely shut down)… maybe the swelling “holds up my head” to the point where my brain is no longer resting on my brainstem……. thoughts anyone????
oh owww… hugs for also likely having chiari…
though I’m wondering… (but I dont really understand these things v well… so it is really just ‘wondering’ )- the ‘when swelling/muscle tightness is there= no autonomic probs, swelling/tightness gone=autonomic probs come back”… I’m wondering whether rather than ‘true chiari’ you might have craniocervical instability??? (or …maybe you are cursed with having both???)
the only things I know of that can be helpful with craniocervical instability are to have v good working core muscles in your neck and special neck braces
hope you will find out if it’s chiari/c c instability and hopefully someone will be able to help you with these things-
one american surgeon that seems best informed about EDS/chiari/cranio… (he works closely with dr. francomano) is a mr. fraser henderson.
xxgBearcat…posture? can’t say it’s the best, although I do try to make a conscious effort. I’ve tried gentle exercising/stretching, seems like by the next day though it makes it worse. I also have loss of “lordotic curve” my cervical spine is completely straight, which would also explain why maybe I have,or what looks to be like, Chiari 5mm, i think due to my spine being straight it make it easier for the cerebellar tonsils to come down, put pressure on everything, and cause these muscle issues over & over again. You know what’s strange though….. when this outrageous pain/swelling is in my neck/shoulders…I have very little autonomic stuff goin on, then like clockwork doc gives me prednisone, which i believe reduces the swelling & within 2-3 days the autonomic symptoms come back with a vengence!!!! I started thinkin maybe(in my case) i could live with this pain,it’s horrible pain BUT, I’d rather be in pain then deal with the autonomic symptoms(I completely shut down)… maybe the swelling “holds up my head” to the point where my brain is no longer resting on my brainstem……. thoughts anyone????
Hon, did you try Diamox in the evening for that horrible pain? I, too have the straight neck (the doc called it a “military neck”), but I was still able to get rid of 97.35% (ha) of the pain with Diamox alone. Prednisone may be activating your mast cells, and this can increase your intracranial pressure (Part 2 coming soon), pushing your brainstem and Chiari down just a bit… Just my 2 cents, my friend. Please let me know about the possiblility of an evening trial of Diamox for you! Fingers crossed. 🙂
This does make sense with the prednisone causing mast cell bc I had surgery on an arachoid cyst in my spine ( which we think was causing my leg pain, numbness and tingling 2 years ago) which then filled back up 3 months later… Then they thought they saw a lesion on t11 and did a spinal tap which showed I had obands….but no other lesions…this actually happened before I had the surgery. So after surgery suggested I had MS. I went to shands…they weren’t sure. USF who said I did, but neurosugerons did not think I did. So I didn’t end up taking meds for MS, but I did take I dose of IV steroids and a couple months later is when I started feeling loose and everything cracking and popping and hair started falling out.. This started 2 years ago. But I did have horrible neck pain for the last 6 years and my neck is straight and twisted. I have had mild scoliosis since the 7 th grade ( I am now 35). But it has gotten worse since the last 6 years or so. I don’t know if bc that is when I started going to chiro and I know they are not good for us…didn’t know I had this till a year ago. So I understand where mast cell makes sense, but I don’t have any allergies. I definitely do get the pressure thing. And I do have that cyst blocking fluid too. It’s weird when my neck hurts the rest of my body seems better then my middle back will hurt then my low back will hurt and my legs will have more symptoms. It feels like my spinal fluid is stuck or really pressured at the spot that it hurts…I don’t know if that makes sense. I have researched ccsvi since Oct. 2009 and had an ultrasound done and it only showed valve problems. I didn’t do anything about it bc I have heard all different about fixing valves. I even did the first or maybe second walk and roll ccsvi walk with dr. Dake in Tampa. I totally believe in it. And can’t wait till they get more info.
I sent you an email about a week ago dr. Diane, but I know you r busy so you might not have read it yet. It explains my whole Story better ;). Thanks for all u do!!!!!!
Oh, I forgot something BIG. MAGNESIUM! We are all short on it intracellularly (even if it is OK in our blood). We need lots (Epsom salt baths are good, too). It REALLY helps with those spasms. I nearly kicked my husband out of the bed a few times (sometimes he deserved it, but not always!). 🙂
This started 2 years ago. But I did have horrible neck pain for the last 6 years and my neck is straight and twisted. I have had mild scoliosis since the 7 th grade ( I am now 35). But it has gotten worse since the last 6 years or so. I don’t know if bc that is when I started going to chiro and I know they are not good for us…didn’t know I had this till a year ago. So I understand where mast cell makes sense, but I don’t have any allergies. I definitely do get the pressure thing. And I do have that cyst blocking fluid too. It’s weird when my neck hurts the rest of my body seems better then my middle back will hurt then my low back will hurt and my legs will have more symptoms. It feels like my spinal fluid is stuck or really pressured at the spot that it hurts…I don’t know if that makes sense. I have researched ccsvi since Oct. 2009 and had an ultrasound done and it only showed valve problems. I didn’t do anything about it bc I have heard all different about fixing valves. I even did the first or maybe second walk and roll ccsvi walk with dr. Dake in Tampa. I totally believe in it. And can’t wait till they get more info.
I sent you an email about a week ago dr. Diane, but I know you r busy so you might not have read it yet. It explains my whole Story better ;). Thanks for all u do!!!!!!
Oh, and Momof3, you don’t need to be an “allergy person” to have a mast cell disorder. The only allergy I have is to CATS, but I have horrendous mast cell disease. What you’re describing DOES sound typical for many of us with increased intracranial pressure (we don’t drain as well lying down). I believe that mast cell disorders are a likely cause of our CCSVI. I wouldn’t recommend angioplasty until you are certain that your mast cells are under control, or you may restenose (in my HUMBLE opinion, as a patient and MOM), as my son and I did. Angioplasty just stirred up his mast cells, poor guy…
Valve problems are huge with us. Elevating the head of your bed can help a bit.
Hang in!
🙂 DianaOh, I forgot something BIG. MAGNESIUM! We are all short on it intracellularly (even if it is OK in our blood). We need lots (Epsom salt baths are good, too). It REALLY helps with those spasms. I nearly kicked my husband out of the bed a few times (sometimes he deserved it, but not always!). 🙂
When you say we are all short on magn. do you mean those with EDS or people in general?
Thanks.Amazingly, EDS patients ALL have low Magnesium INTRACELLULARLY — even if Mg checks out OK in your blood, you may be low within each cell. This is true for M.S. patients and their erythrocytes, too, interestingly.
Thanks. Do supplements help or do they just suffer the same demise as magnesium from the food. How can I effect the intracellular absorption?
Hmm, so I know close to nothing about mast cell disease, nor its relation to EDS, but from what I just read above, it seems Prednisone can aggravate these symptoms?
I’m wondering because I was given a round (two actually, but only took one full dose pack) of methylpred last summer for my severe lower back pain (early onset spinal arthritis) and it was around/after that time that my everything (MVP, joint pains, dysautonomia symptoms) began to really act back up like they haven’t in ten years… Interesting.
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