mkoven

I'd recommend doing a search on Dr. Fouad, as a number of people here have seen her. Tell the hotel that you are a patient, to get a discount. And one word of advice--the Day's Inn near CC is cheap, but kind of dirty and run down.

It's really important to see a doctor with LOTS of experience dealing with heredtiary connective tissue disorders. ednf.org is a great resource for finding someone. having a doc tell you that you will have chronic pain and many surgeries is not helpful. eds affects people to differingextents, and there is a lot you can do to stabilize. which isn't to say it isn't a huge deal with a major impact. (BTW, surgery is usually a last resort for us, as we don't heal well. GOOD pt with someone who really gets hypermobility is the first resort.) when someone tells me I just have to accept my current level of pain/instability, I take it as a sign that THEY have run out of ideas. I"ve done a lot of work on my own to figure out what helps and have gotten a lot better, from a joint perspective, through a combination of pt with stabilizing exercises, myofascial release, and braces (when necessary).

I"m STILL waiting for results of an upright mri of my head and neck--but , that's an aside. Any chance you have a connective tissue disorder, like eds? If/when I get the results, the doc is looking for different types of brainstem compression--from cervical cranial instability, chiari, or tethered cord. If you have some tissue weakness, you are more likely to have issues. The geneticist I saw was very insistent that my mri be upright (seated), to see what gravity does to the structures in my head and neck. Be very careful before letting anyone manipulate your head/neck. I have had skilled massage people work on the area, to relax the muscles, and some pt to teach me to stabilize things. Personally, I would not feel comfortable letting someone do anything with any force up there.

I'm 42 and undergoing some kind of hormonal weirdness. My GYN thinks it's not necessarily that my hormones are off, but that I tolerate the fluctuation a lot less well than I did when I was younger. I never had any real issues till I hit 35--of any kind. And then, kaplooey. I get some waves of heat on the first day of my period, but that's it. Still somewhat regular. But all my ans stuff, migraines, etc. are hormonally triggered--and I never had any of this when I was younger.

I also have dermatographism and sometimes get really red and itchy during treatment. it seems to be most likley when she's working on an area that hasn't been treated recently, that may have extra scar tissue??? but I seem to be an unusual case for her. I always feel sensations in areas distal to where she's working, get odd ans reactions, etc-- a walking example of how everything is connected/integrated. she says she's never felt fascia like mine before-- she described it as sloshy and swirly--like it both tightens and releases too fast and too much.. again with the hyperresponsiveness?? it really has helped my back and hips to have her work on my psoas. she's very gifted. but there are days when I'm very autonomically fragile and she has to be more gentle. my icey hands really throw her for a loop! (BTW, the doctor himself used to be a massage therapist before med school, so has an unusual appreciation of how muscles and fascia work, much more so than any other musculoskeletal doc I"ve seen. Sadly, I'm leaving DC soon, and will have to leave these folks. )

interesting idea about bringing bp cuff. i often feel i might faint, even though i'm flat on my back. and a treatment has the potential to either calm down a migraine or bring one on. all of this is worst when she works on my psoas. she works through a doctor's office-- a physical med and rehab doc. she's very good, no question. I am curious now what my bp is doing. I think it is helping a lot of my eds joint stuff.

can anyone explain this- I get deep tissue/myofascial release for chronic musculoskeletal issues. I'm lying down throughout. It's not painful, jut can be intense. Anyway, often my hands are FREEZING and I feel woozy during a treatment. My therapist has never seen this before. Her theory is that blood is getting shunted around, depending on where she's working? Any other ideas?

Last year my ans doc said I could deduct the ac bills as a medical expense on taxes, as it was/is medically necessary.

it's actually a back brace that closes with velcro--no metal stays, just very firm , a little stretchy. I have it on as tight as it will go around my lower abdomen, with stockings on underneath. definitely helps.

I've been on florinef for almost a year, and it's really helped even out my bp. I do wonder, though, about possible longterm effects. I'm at a low dose--.075 (3/4 of a .1 pill) and my bp is rarely over 125/70--usually 115/70 or so. I still feel okay when it's 105/65. Much lower, and I start to feel a bit unwell. So it hasn't made me hypertensive. My potassium has been consistently normal. It's just still strange to me and everyone around me to be TRYING to retain fluid. And then there was just a study showing that EVERYONE should lower their bps, even if they are "normal" to better control risks for heart problems (Of course, not written about us--just the general populace.) Just nervous. I'm scheduled for my annual echocardiogram in a month and just hope there are no bad changes. The main changes in the last year have been florinef, norvasc, and regular exercise. I also have eds, and they like to follow up on aorta and valves.

I'm having my premenstrual ans struggles, but worse than usual. I don't usually do abdominal compression, as it's not very comfortable, but I was feeling so lightheaded, achey, blurred vision, short of breath, I went for it. I pulled out an abdominal binder and put in on as tight as possible, and pretty quickly, I started to feel almost normal. My doc had told me that some of the menstrual stuff is literally because the uterus is stealing from circulation and more blood is pooling there. So I guess I really am a leg and abdominal pooler. It's yucky being so wrapped up when the weather is warm, but it beats feeling like I can't get enough blood above the waist!

I've had no accident, but after back surgery (L5-s1 discectomy/laminectomy), it felt like all my joints went to @#$%. It turns out I have eds, but I think trauma to that area messed me up all over. I'm still limited, but have improved a lot with really good pt, myofascial release, and braces. It's really important for me to see that all the injuries are connected. My knotted up psoas played a role in my back, hip, and knee issues. and because I was walking funny, my ankles and feet were not happy. and we've recently learned that my thoracic spine is playing a big role in my neck issues. I do daily stabilization exercises--mostly closed chain (foot on ground). I get wonderful deep tissue/myofascial work 1x a week with someone who really senses how everything is connected. and I also use a foam roller and hard rubber ball to work some of my bad areas on my own. I also now can tell when something feels wrong, so that I can nip it in the bud. To the extent that I am able, aerobic exercise helps me manage pain and ans stuff. These days, I walk slowly on a treadmill at full incline. The incline makes me engage my muscles in a way that stabilizes the joints. And the extra muscle work helps pump the blood back, so I'm less potsy. and now i love the endorphins. it feels like they wash away a lot of the pain and reset my ans to a certain degree. It did take me a long time to get there, though, including some cardiac rehab. I'm very careful about posture and pacing and try to never let my pain get above a four. I've learned a lot about anatomy along the way, and how different muscles can work together productively or unproductively. I'm not fixed, but tons better than I was. I have not had good luck with injections. Synvisc made my knees swell up painfully. Steroids only further weakened my weak tissue. I take ibuprofen or tylenol for headaches, but for the most part manage my muscle and joint pain without pain meds. this was not true initially. I was on some pretty hefty pain meds when everything first kicked in.

I"m originally from Champaign, though am in DC this year. I can't imagine that the weather is that much different from Ohio--so humid summers, cold, wet winters. Can't say Champaign is so great for ANS docs. I've traveled to Chicago and Cleveland for better care. I have "trained" my pcp about dysautonomia, and he's a good guy, but it's certainly not his specialty. What locations in central/southern Illinois are you considering?

the popping is actually from loose ligaments. muscle imbalances can "pull" a joint so it is more likely to get injured. for me the combo is the big problem. if i can keep my muscles balanced and out of spasm, i have fewer subluxes. for my hips, this means keeping hip flexors, extesnsors, and stabilizers in harmony-- ha! my hip flexors are a knotty mess and prevent me from engaging my glutes which destabilizes my hips. pt has helped, but my femur still partially slides out of the acetabulum constantly. the ligaments are too banged up to really do their part. if i can catch a popping joint early, before it becomes chronic and really damaged, i have a better chance of addressing it with pt. my kneecaps have settled down nicely with strengthening quads and releasing tight IT band with foam roller.

yup-- sounds like it. for me there are degrees of "out"-- from the somewhat uncomfortable, to the excruciating. I've had the sensation in my ankles, meta tarsals, toes, knees, hips/pelvis, low back, neck, shoulders, and elbows. Ankles and hips/pelvis are currently the worst. I also have to slide the pesku joint back in asap. i ignore those who tell me that the noise is "just a gas bubble." I feel bones collide-- that ain't no gas bubble!

Tearose, When you say heart pain, do you mean from your prinzmetal? If so, do you feel that the estrogen helps manage that? I know you've posted about prinzmetal before. (I appear to also be in the vasospasm club). Am I remembering right? If so, do your docs connect the chest pain and hormones? This is very interesting to me, for obvious reasons. The ans stuff is miserable, but the prinzmetal scares the %$# out of me, as it can do damage. Pretty much any health issue I have is made worse when I have my period and right before.

I think it does make a difference in treatment, as it points to a mechanism...poor vascular tone. I do think it is underdiagnosed. I've had some docs tell me I was "normal," but then couldn't explain all my injuries and subluxations. My beighton score is 4 at best. I think it is only very experienced docs who can get an overall sense of the "feel" of the tissue to know. The geneticist I saw had a sense of what my skin, eyes, scars, joints, ears. nose cartilage, etc. should and shouldn't feel like.

What I've never understood, though, is why so many of us women then are worse during our periods, when estrogen is lowest.

no tolerance, though last summer we had to keep increasing the dose, as I felt so bad, until we added florinef. Too much midodrine and I get bradycardic. I've been on the same dose- 6.25 mgs every 4 hours for about a year. I can tell when I'm late. It is very short acting. it seems to work synergistically for me with the florinef.

If you are wondering if you have a connective tissue disorder that is behind your ans issues, it may be worth pursuing. it is important, though, to be evaluated by someone very experienced in recognizing and following such issues. my best experience was with Clair Francomano, a geneticist who used to run the NIH studies on heritable connective tissue disorders. she's seen thousands of cases and knows about the ans component. It would be important to know the experts where you are. the average doctor may not have much experience and look for extremes of flexibility that are not necessary to demonstrate that there is a collagen defect. I definitely have a connective tissue disorder that we are calling eds, for lack of a more precise label for my particular brand of tissue fragility/elasticity. parts of me are quite hypermobile, parts of me aren't, but all of me is fragile, as I've injured most joints at some point with minimal trauma. she was also able to look at the feel of my skin, the ratio of my wing span to height, high arched palate. My knees and elbows hyperextend quite a bit, but my fingers and hands are more fragile than they are stretchy. But she has enough experience to realize that there are different variants of these disorders. and the fact that my pelvis, hips, lower back, and neck are barely holding on, with constant subluxations is not just part of normal wear and tear. I'm currently waiting for results to see if I have cranial-cervical instabiolity from a hypermobile skull; my aorta also has to be monitored periodically, in addition to the endless physical therapy to stabilize joints and keep me functional.

Fortunately this is one area where having meat on one's bones is a good thing. I'm 42 with normal bone density. Vitamin D, calcium, and ,magnesium. I suppose I'll get them checked again in a couple years.

I've been on the same dose for almost a year, no problem. I found it wasn't enough early on , and could feel it not having enough of an effect until we added florinef. I think my symptoms were getting worse and I needed something to supplement it. I take 6.25 mgs every four hours during the day, and 5mgs at night. I notice if I'm late with a dose.

I'm in a similar situation. I still get migraines too often. One thing that really helped is getting diagnosed with sleep apnea and treating it with cpap. but I need a preventive. anti-seizure drugs have been very hard for me to tolerate--they either mess up my thinking or flatten out my mood (and I'm not bipolar). beta-blockers and I don't get along because of mast-cell isssues and vasospasm. I just tried a higher dose of a calcium channel blocker. I can tolerate a lower dose that doesn't help the migraines, but at a higher dose it really messes up my ans issues. and I've broken out in hives with every tricyclic I've ever tried. triptans and ergots are out for acute treatment as I get auras that mimic stroke/tia. at this point, all i do is ibuprofen + tylenol +tigan. allergic to fioricet. my migraines are getting more frequent again--don't know if it's weather or hormones.

I had a terrible time tapering off three weeksof 60mgs/day of prednisone in 2006. It was esp bad when I got below 30mgs. As I got lower, I had to taper more slowly. I remember one episode vaguely reminiscent of what you are describing, though not as extreme. I did have repeated episodes of getting really shaky, lightheaded, and just feeling like I had suddenly and dramatically run out of all gas. I'm trying to remember, but I think I was eventually given prednisone in 5mg and 1mg tablets so I could taper more slowly. The last 10mgs were the hardest and took me several weeks. My response to steroids--both taking them and stopping them is exaggerated. I'm sure my ans issues have a role here.

boric acid is a good roach repellent. I'm allergic to the more "natural" sprays that have pyrethrin in them-- VERY allergic. But of the itchy/sneezing uncontrollably variety, not ans stuff directly.