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smileyface

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Posts: 161
Reply with quote  #16 
Hi,

So I realize this is an old thread...but I think I remember Drew's sister? (or some other familial relation) having POTS?  Have either been evaluated for Joint Hypermobility Syndrome (JHS), sometimes called Ehlers Danlos Syndrome (EDS), Hypermobility Type?

I have EDS (about 70% of people with EDS are predisposed to having POTS), and I have a lot of joint pain, etc...

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drewswife

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Posts: 90
Reply with quote  #17 
Hey there!  I know I've been pretty quiet lately, and I'm sorry for not contributing enough to this community.  Things have just not changed for us in the slightest--Drew's still in the hospital every 2-3 weeks for 10-14 days at a time, and it's really begun to overwhelm me again.  I have to echo one of the other posts: sometimes it's just too frustrating to talk about.  Still, thanks to Robin checking in on me, I'm trying to be more involved.  Anyway, all that's to say HELLO to everyone again  

Smiley, I haven't heard of either of these syndromes, but I'm certainly interested in learning more.  Drew's having so many aches and discomforts these days that it's hard to know what's what.  I'm sure that some of them are related to being in bed so much, but the other factors are certainly a mystery.  Drew's sister, who has POTS, hasn't ever mentioned being tested either, but she doesn't experience significant joint pain.

I'd like to hear more; I hope you're doing well!
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smileyface

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Reply with quote  #18 
Hi! I think I've asked this to you before, but have you been able to get home care at all? When my CVS was really bad, I was able to go on home care, and then I didn't have to go to the hospital anymore.  They give you little backpacks with the IV pump in it.  I was able to give my own medications intravenously right when episodes started, so I was able to abort them much more succesfully and through trial and error was better able to figure out what works.

Sorry to hear things still aren't better. Sending healthy vibes your way.

Ehlers Danlos Syndrome, Hypermobility Type (the kind associated with POTS...the other kinds aren't applicable...some people read about other kinds of EDS and get scared...important to remember that it's the hypermobility type)...is a disorder in which there is a defect in your collagen.  This causes the joints to be "loose".  The test for hypermobility type is one point for each manuever the patient can do
1) touch thumb to wrist, one point for each hand
2) hyperextend the elbows more than 10 degrees, one point for each arm
3) hyperextend the knees more than 10 degrees, one point for each arm
4) bend the pinky finger back more than 10 degrees, one point for each hand
5) touch the ground with palms flat
That makes a total of 9 points.  A score of 5 or more is positive for EDS, Hypermobility Type. A geneticist should be able to make the diagnosis.  In addition to joint pain, POTS, and many other things, EDS is associated with a lot of stomach issues such as gastroparesis (delayed stomach emptying), and severe reflux.

Relatively I'm doing pretty awesome, thanks!

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drewswife

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Posts: 90
Reply with quote  #19 
Hey, Smiley.  I've thought about the home care option a lot, but we still haven't tried it.  The thing that always holds me back is the med dosage; I don't know if they would allow me to administer high dosages of medicines at home.  I guess it's worth asking, though, and I'm encouraged to hear that it was so helpful for you.  Do you know if others have been able to administer the meds they typically get in the hospital at home?

I asked Drew about each of the 5 tests, and he definitely can't do any of them.  He's never been very flexible.  I really appreciate you thinking of him, though, and trying to help us figure out his joint pain.  We appreciate all the insight and suggestions we can get!

That's wonderful to hear that you're doing relatively awesome!!  People like you give us hope.

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smileyface

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Posts: 161
Reply with quote  #20 
Hi! I was able to get the same dosages through home care that I was able to get home.  But only as long as I had tried them in the hospital first, and not had a bad reaction like an oxygen desaturation.

How's Drew doing now?  Out of the hospital?

I'm unfortunately in the hospital , but hopefully will be out soon. 
It's been almost 5 months since my last visit though which is exciting.  But they're having trouble with me these past two weeks, so I might get a port and do home care, so I can continue to go to school.  I love home care, it really makes things easier to manage.  So worth trying...although it can be a little hard to set up at first.

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seraphim_amon

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Posts: 82
Reply with quote  #21 
Just this week my doctor after running about 50 blood tests had me do what is called an IV Iron Dextrane infusion. My liver was swollen and only functioning at 12% from all the vomiting. I had to sit with this IV in my arm for over 8 hrs, but, I got some of my energy back, and some color back in my skin, However this will be something I have to do once or twice a month for the rest of my life. My CVS always depletes (for some reason) the Iron stored in my body........I did get a lil sick after but not as bad. It is not a cure all I still have CVS, this helps however keep iron levels stable. And allows me to have a bit more energy and helps me absorb the medications better.



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There is much suffering in the world - physical, material, mental. The suffering of some can be blamed on the greed of others. The material and physical suffering is suffering from hunger, from homelessness, from all kinds of diseases. But the greatest suffering is being lonely, feeling unloved, having no one. I have come more and more to realize that it is being unwanted that is the worst disease that any human being can ever experience.”

~ Mother Theresa
20th century humanitarian
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rochelledunkerley

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Reply with quote  #22 

I have joint pain in my lower legs everytime I have or prevent an episode.  I have an episode every month linked to my hormonal cycle but whilst still getting sick one day a month since being on amitriptyline I have improved greatly.  Without it I am sick for 5 days each month continuously unless sedated.  I am really interested in hearing others have experienced joint pain i use it now to start taking preventatives

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TeenSufferer

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Posts: 685
Reply with quote  #23 
Hello everyone,
 
I have said this before but ill say it again, When i go into a episode i get pain when i bend my arms and legs. I can cope with that, but what i cant cope with is the hands and feet. When im in a episode my hands and feet bend up, my fingers all stick together as if you are trying to touch each finger tip together, or my fingers will collapse into eachother. They get stuck like this for hours/day sometimes for the whole episode. It hurts Alot and im unable to hold things or walk. It makes it hard for doctors to put cannulers in or sometimes they pinch the joints of your fingers to see if you are dehydrated and if my hands are all bent they cannot do it.
 
I have never mentioned it to the doctors because they have seen it themselves and havent said anything so i never though it was a problem.
 
When i see Dr. Chong on the 23rd August im now going to bring it up... i never thought it was anything to tell a doctor!

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Shaynie
I have overcome one of life's biggest obstacles, But im here to help!

*please excuse any spelling mistakes, typing on a touch screen phone is not forgiving*
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dave

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Posts: 117
Reply with quote  #24 
Shayane-
this happens to my husband during an episode and it's like a charley horse.  That's what we call it.  It is very painful.  I don't know if it's dehydration or just cramping  because of the retching.    I am sorry you have this but know that you are not alone.
Take care of yourself-
Robin

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dave digregorio
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bratdawn

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Posts: 62
Reply with quote  #25 
I have been having a myriad of seemingly unrelated symptoms, but am starting to see if any of them actually are related to CVS after reading these posts.

I too, have horrible joint/muscle pains from time to time. My mother has Polymyalgia Rheumatica, so was thinking I may have it too-auto-immune illness run in my family. I am in remission from ITP (Idiopathic Thrombocytopenia Purpura) a disorder where your body starts producing anti-platelet antibodies, reducing platelets to a critically low level. I had a spleenectomy to keep it from killing off the anti-body coated platelets all together. I still have "sick" platelets, and bruise easily, but at least I have them. Many of the meds they want to try on my CVS are not platelet friendly-like Topomax, and NSAIDS, so there are many I cannot take. Living w/o a spleen is the resulting complication, causing me to have to avoid infection at all costs.
I was diagnosed with Fibromyalgia when I was in the hospital a couple of years ago due to the joint pain, but I am not so sure.

I have deep bone pain at times too..but x-rays, ct scans, an MRI's all show no abnormalities. Another thing which drives me crazy is the hives..I have posted a question about these on the Adult Forum.
Because of all of the different problems I have, it not only is embarrassing (I sometimes feel like a hypochondriac) I have not investigated too deeply into some of the causes of some of these things.-But they certainly give my very few "good" days. Sometimes I wake up in the mornings doing what my kids refer to as the "Frankenstein
walk".

Now I wonder if the joint/bone/muscle pain have anything to do with the causes of my CVS? These other symptoms, however due not neccessarily conincide with a CVS episode.

I had to call an ambulance this past Saturday morning, because I awoke with severe left sided chest pain. It was hard to breath as it felt like I had a c-clamp around the side of my chest to my back, putting extreme pressure on my chest. It scared me to death, and so my hubby called the ambulance. Everything was normal as far as tests go, but the doctor said it could be my hiatal hernia which I have had for several years with no problems. I was released and sent home as eventually my symptoms sub-sided.

One trigger I did notice was  a URI/cold like symptoms the week prior to my May CVS hospitalization. I sometimes also run a fever in the hospital (102) during a
CVS episode.  Dr's can't figure out why this happens. Any input too any of the above would be appreciated...


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Dawn M Hunter-Risas
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dave

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Posts: 117
Reply with quote  #26 
My  husband also has the joint pains without beig in an episode.  especially  arms and legs.  But he has a hernia as well that they have not done anything about because they worry that he will do worse damage after the surgery if he goes into an episode.  He gets  jaw pain that goes down to his arm and chest.  It's so scary but we've checked it  with the drs. and it doesn't  concern them and isn't a heart related issue.  This CVS   puts so much strain on your body == I think that's why certain things start to go wrong  and it seems so many things starrt to go wrong.   I wish you beter days God bless.
Robin

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dave digregorio
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ginab

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Posts: 60
Reply with quote  #27 
My husband suffers from all of these things too.  The hives baffle his doctors, they feel it must be his body' reaction to the extreme stress during an episode.  We know that unless he gets hives the cycle isn't complete for him.
The aches and pains have been explained to us as the bodies reaction to the stress as well, when you are invaded with this strain on your system inflamation kicks in and here come the aches.
He sleeps pretty much around the clock for 1-2 days before and episode fully hits, does anyone else notice this symptom?

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gina m Bojarski
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Madison

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Posts: 69
Reply with quote  #28 
I have joint pain, and was diagnosed with severe Rheumatoid Arthritis about 5 years ago - which was when my CVS started deteriorating (getting inter episodes, being hospitalized every month until I was diagnosed this spring). The first rheumatologist I went to said I may have connective tissue disorders and then when he got MRIs done of my ankles feet, wrists and hands, he said there were erosions in my joints which is kind of the aundeniable proof that it is RA (which is a type of or related to connective tissue disorders). I've been on a variety of shots or infusions for the RA since then. The last one I used was Rituxan (an infusion) and that seemed to really help my RA the most. I also have dysautonomia and a while back I read a couple of postings about dysautonomia possibly being linked to CVS....Does anyone know where this might be discussed in the literature? I'd like to bring it up to my doctor if I can find anything.....Thanks! Take care, all


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madison
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dialecticstlh

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Posts: 3
Reply with quote  #29 
My son complains of leg pain and often wakes in the middle of the night needing motrin and heating pad (they keep telling us its growing pains) except he has also begun having foot pain ("feels like toothpick in my feet"), hip pain and back pain. Once in a while he complains of brief arm/hand pain. He's also hypotonic and hyperextensive, don't know if they are related.

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Tracy Hartman
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mahler1987

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Posts: 3,035
Reply with quote  #30 
Im not sure how related this is.  However, I have what can only be called floppy or loose joints... even just a little bit of a hyperextension, or hyperflexion and Im tearing tendons and ligaments.  My orther believed this was related to the fibromyalgia and/or lupus.  While there is the big push on finding the mito connection, I think when push comes to shove everything is mito related in one way or another.
But thats just my opinion.
 
Pattie

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I may have CVS but CVS is not me.
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