NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Not sure where to start… is all of this EDS?
- This topic has 9 replies, 5 voices, and was last updated 10 years, 5 months ago by Barbara.
September 29, 2012 at 12:38 am #316
I need help finding the right Drs, I was dx abt a month ago by my rheumatoligist. He said he doesn’t understand EDS so he is sending me to Chicago next month. I need to know what all these symptoms mean and who to see for them. I am a 9/9 on the Beighton scale, I failed my tilt table test heartrate went from 60-145 and then the gave me medicine to see how high it would go, after the 3 injection my blood pressure dropped and the layed me down. I am on beta blockers but have lots of rapid heartrate still. My right shoulder hangs from the socket because of an injury in April. It is a multidirectional dislocation. Not getting any better with therapy. Been in a bolster sling for 8 weeks. Here’s the boring stuff.. Extreme muscle weakness, TMJ (really bad), Ringing in ears!, Pain behind eyes, Dizzy, when I bend over, feel like eyes are going to fall out! Headaches/migraines, Hips grind/sublux, Unstable ankles (injuries), Fingers require splints, Wrists sublux/dislocate, Electrical feeling in hands/feet, Numbness tingling in hands feet, Extremely cold hands and feet, especially at night, heat intolerant, Can’t sweat- maybe 2-3x in my whole life, Wake up really hot at night, Totally stiff in the am, Going potty A LOT at night, (sorry tmi) Brain fog, memory loss, Exercise 5 mins 186 heartrate = no more of that, Eyes jog around randomly, Right knee buckles every 3 step, Receeding gums, Dizzy upon standing, Stars in my vision/ flashing as well, Dislike bright lights, Somewhat stretchy skin. I don’t know what normal is? I can see all my veins, Atrophic scars white, flat, thin, IBS, rectal prolapse (tmi again), Extreme trouble swallowing, Extremely allergic to pineapples and bees (deathly), I have had back surgery L5-S1, I also had a placental abruption in my first pregnancy. Pain, everywhere, all the time… Etc etc. Where do I start?September 30, 2012 at 12:19 am #2969
Ok, so I am getting a little nervous that 18 people have read my symptoms and have not responded. I watched the videos but am am not as familiar with some of the terms/abbreviations so I posted my symptoms in hopes someone could tell me what kind of Dr I need to see. My Rheummy doesn’t know how to treat me, my cardiologist has never heard of it, my orthopedic surgeon is afraid to do surgery on me, I’m his first EDS patient. Am I in the right place? I see a geneticist in October, does he treat all of these sumptoms? No one has ever talked to me about EDS. I’m on my own… Well except I have the Lord and a really awesome husband. 😉September 30, 2012 at 8:24 am #2970JewelsParticipant
I would love to be of some help, but I am new to the site and am not familiar with most of the terms either.
As for a doctor, I lucked out with a pain doctor because that is my most debilitating symptom. He actually treats quite a few people who are hypermobile. His explanation for that is that he is not in a hospital environment and feels like people end up in his office after they have been through a variety of other doctors. Due to that he tends to see people a typical pain doctor can not help because they are not aware of the symptoms. He has taken on the task of learning each individual and what is going on with them. He has had so many such experiences that he properly diagnosed me on the first visit and had a plan of action ready. He also has meetings with a group of doctors that talk about hypermobility. I have no idea how to find out who those doctors are or what their specialty is. He says that he is always on the look out for hypermobility right away. When he finds it he immediately looks for pain, sleep problems, hormonal imbalances, and depression/anxiety. Those are the 4 things that he and his group of doctors have noticed are common in the majority of hypermobiles that walk through their doors. Not all have all 4, but most have at least 2 or 3. I have all 4. Those cause large variety of symptoms, but at least they are acknowledged. I have tried to find a doctor that is closer to my home and workplace, but have failed. No other pain clinic in the area will see me, nor any of the rheumatologists, so I continue to make the drive. It’s worth it.
I relate to many of your symptoms. My ankle/knee issues have vastly improved since working my legs out a lot (hike large distances and treadmill). My doctor believes that one of the best things for hypermobility (just the elasticity of ligaments part) is to build up the muscles around the area as much as possible so they can better hold the body together. It’s not easy and sometimes not even possible and it would need to be a life long thing if it is possible. It has helped me a lot. My ankles no longer trip me when I walk, and my knees are no longer popping and they no longer feel like they slide to the sides. Once we squared away my pain and asthma I have been able to work out. It was slow going though.
The electrical feelings and numbness sound neuropathic. 98% of my pain is now nerve pain and most of it is in my upper and mid back. Without medication it slowly creeps into the rest of my body. I rarely have muscle pain since working out, but my nerve pain is severe enough that I am disabled without treatment. In my case opiates simply do not work. I am currently using Xyrem and compounded Naloxone for nerve pain. When I last spoke with my doctor he said he’s found that the majority of hypermobile he has treated respond very well to Xyrem for pain and sleep issues regardless of if the pain is muscle or nerve, but not all respond. The theory is it does well with muscle because it releases growth hormone which is thought to help muscle repair and nerve because poor restorative sleep leads to nerve pain. Xyrem offers restorative sleep for longer periods of time and much quicker. Naloxone is a bit more unreliable and only works for nerve pain. He estimates that it works in thirds. 1/3 get no relief, 1/3 get some, and 1/3 find it to be a miracle. I personally fall in the 2nd bracket. It helped me a ton when I lost access to Xyrem, but now that I have it back I’ll be ditching Naloxone. Without Naloxone I could do nothing at all so it was a vast improvement to be able to hold down a job and continue my exercise. I still had moderate pain every day though. Xyrem, had me at zero – 3 pain for 5 good years. I just want to note here that I’m not suggesting either medication, these are just my experiences and the findings of my doctor. Both medications are way off label and insurance can be particularly crabby about Xyrem (It is EXPENSIVE). I almost never hear either of these medications mentioned on any EDS site I have been to. Xyrem is more common on Fibromyalgia boards because it was found to be very successful in those patients during their studies. Sadly, the FDA decided they did not want that many people to have access to the medication. And I understand that to an extent.. it is GHB and it was used as a date rape drug for a period of time, but there are not many good fibro options, so I am sad for them because of that.
I also share your cold hands/feet, I am somewhat intolerant to heat, and also very rarely sweat. To get my hairline damp I typically have to hike a strenuous mountain for a long period of time(4+hrs). I never sweat on a treadmill or if I am just walking and certainly not from day to day stuff. I have assumed in the past those issues were due to my low pituitary function (thus low thyroid function). My body temp is in the mid 96 range, pulse and blood pressure are low. I also do not tolerate bright light or loud Noises. Brain fog for sure and short term memory loss, but I have noticed those get better when my pain is sorted out. My skin is a bit stretch too and I am slow to heal. The tiniest little scratch becomes infected and often scars. Very quick to bruise. Allergies galore. I am scared to death to have children because I was told by my gyno that I’m high risk enough with this condition that I would need a doc that specializes in high risk pregnancy. Oh, and I also feel like I pee a hundred times a day, lol.
I don’t have many answers in relation to this site, but hopefully just knowing someone else shares some of your symptoms will help. Sorry, that was a mini novel!September 30, 2012 at 8:51 am #2971
Thank you Jewels! I think about the only “exercise” I can tolerate is in the water. My joints are way too loose for anything else. Thanks so much for responding, sounds like I’m in the right place! 😉September 30, 2012 at 12:00 pm #2973EdenRoseParticipant
I am also new to this website and newly diagnosed May of this year with Classical Type Ehlers Danlos Syndrome. Welcome to the other side of diagnosis. I know how horrible and scary it is on the other side with no answers that seem to make sence, while you just get sicker. Diagnosis for me was like all the pieces of my life fitting together and I was able breath and know that I am not alone in this fight. You now have so many people out there who know what you are going threw and that is priceless. Still the medical community is largely unaware of what a patient with Ehlers Danlos Syndrome might look like. We don’t usually go in complaining about stretchy skin and joints popping out? I will say a prayer for your next appointment in Chicago . My best advice to you is study about your illness as much as physically possible. Print info for every doctor you see. Lol I printed a 41 page presentation that Diana wrote for my eye doctor. Last week. I even made him go over what tests were done like three times to make sure. My eyes were dilated so I couldn’t do it myself lol you had to be there. Missed a few so I have to go back.October 1, 2012 at 6:33 pm #2981Give My Daughter the Shot!Participant
Hi PastorsWife. I’m relatively new myself and have experienced a gross lack of decent medical care since moving from my home. I wasn’t diagnosed until after a massive plethora of health problems began chronically attacking me, AFTER the move. I have much of what you do, though I won’t repeat. Again, I’m definitely NO EXPERT! What I can recommend is that you be a good steward of the strength/energy that God has given you and DO IT RIGHT THE FIRST TIME by going to the proper doctors, assuming you have access.
Dr. Francomano is in Maryland, Genetics
Dr. Cheney is in North Carolina, CFS
Dr. Grubb is in Ohio, Dysautonomia
Dr. Pocinki is in DC, Internal Medicine
Dr. Deitz is at Johns Hopkins but I think he deals mainly in Marfans and heard his name from someone affiliated. I haven’t personally investigated his credentials.
I believe Dr. Francomano would have the appropriate specialists, such as neurologist, etc etc etc to recommend for you.
I cannot speak from first hand experience because I am stuck ‘wasting’ healthwise myself due to not having proper medical care. I have researched myself blue in the face. It’s absolutely inhumane what I am going through. I can only suggest that you get yourself to the ‘top of the foodchain’ doctor and avoid all of the suffering that you may experience otherwise.October 2, 2012 at 8:55 pm #2991
Ok, so I am getting a little nervous that 18 people have read my symptoms and have not responded. I watched the videos but am am not as familiar with some of the terms/abbreviations so I posted my symptoms in hopes someone could tell me what kind of Dr I need to see. My Rheummy doesn’t know how to treat me, my cardiologist has never heard of it, my orthopedic surgeon is afraid to do surgery on me, I’m his first EDS patient. Am I in the right place? I see a geneticist in October, does he treat all of these sumptoms? No one has ever talked to me about EDS. I’m on my own… Well except I have the Lord and a really awesome husband. 😉
Never feel black-balled about posting your thoughts and experiences. Many times I read a post and either don’t have the energy (or have too much other work to do!) to respond, it doesn’t mean I wouldn’t like to respond, it’s just my condition and circumstances that let me down.
I think it is important that all symptoms are exposed and yes, many of them are weird! People will ‘search the internet’ for their symptoms for years to come and read these posts and it does help to find you are not alone.
(UK)October 2, 2012 at 10:54 pm #2995Give My Daughter the Shot!Participant
You are loved. Thank you again for helping me. Your encouragement towards myself and others is much appreciated.
God BlessOctober 3, 2012 at 9:17 am #2996
“Welcome” new people to the site (new to the site maybe but not new to the condition, right?!)
It’s unfortunate that this ‘condition’ which many of us suffer is all-embracing, this is referred to as ‘systemic’ in the medical world, i.e. something that affects systems throughout the body. It has an influence on many systems – the autonomic system, the nervous system, the gastric system, the circulatory system, the endocrine (think hormones) system, to name but a few.
The difficult trick, as you probably know, is to narrow down what’s ‘CAUSING’ the symptoms (whereas western medicine oftentimes just masks the symptoms). That’s why it’s so good to have Dr Diana, Dr Francomano, Dr Cheney, etc on our side, fighting our corner, trying to educate, research and address the root of the cause (or causes, as seems to be the case).
There are many helpful posts on this website, that you can find just by typing in your ‘area of concern/interest’ in the search box above. You’ll soon find that you are far from alone with this condition (reassuring enough in itself, I know).
Just a note about any links that you may find in the forums – they don’t work by clicking on them (you are just sent to a blank page) instead you have to copy them into the browser. I know not all are computer buffs, so for the benefit of any computer newbies (Copying: – first highlight the link, then press the ctrl button + the c button, to copy it, then mouse-click in your browser field, to make it active, then use ctrl+v, to paste the link).
(UK)October 3, 2012 at 9:46 am #2997
Hi ‘Give my daughter the shot’ and All,
Thanks for the video link to the ‘CSF Ehler Danlos Colloquium’ (Dr Francomano), whilst I was there, I found another interesting video:-
Dr Jan Dommerholt talks about pain and muscle involvement, and what’s been discovered to be happening within the muscle, showing different ‘sats’ and ‘chemical read-outs’ within these areas of pain trigger points in muscle.
He also gives hope about a forthcoming change regarding all of our years spent trying to get diagnosed, it’s certainly interesting.
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