seriously?

[lumina92]

Ok about a month ago every single joint in my body swelled up huge and started to hurt really really bad. I waited a week it didn't get any better. I went to dr. who did bloodwork, she said i had auto immune disease activity so sent me to a rheumatologist. The rhuemy looked at my elbows asked if I ran for exercise I said yes but not for over three months because of a dislocated toe, a series of headcolds and now this joint pain and swelling which by now has been over a month. She bent the fingers on my hand backward after i told her they hurt really bad and told me I have ehlers danlos syndrome. She said based on my kneecaps being unstable and my elbows hurting and my fingers bend too far back she could make that diagnosis. she said all I have to do is stop working out and I will be fine. Seriously? she said no aerobics, no running,jumping,dancing...I looked up ehlers and some of the stuff does sound like me but for the most part no. I can not in any way bend my thumb back to my wrist, my skin has virtually no elasticisty whatsoever... is it possible to have ehlers danlos but not have the range of movement that they are talking about? my ankles do frequently roll and I have been told my feet are fairly flat. I also bruise quite easily. but where does joint swelling come in? and how did i injure my fingers, elbows, and jaw by running? she said i need no follow up i just need to stop working out unless its pilates or swimming. any advise?

[selmaS]

Glad to be of help : )

[auntissie]

Thank You.  I need to correct the posture of a POTS person--It should be horizontal.  Anything upright brings on the issues.  The bike may work, but I don't think I could do that right now with my foot.  But the pool, would be lovely.  I love to swim.  It might help to start walking in a pool too, it would take the weight off the foot and if you fall, you can swim.  Good advice.

[selmaS]

Most likely a recumbent bike may work....with EDS I was told the bike would be ok...and weights up to a certain amount....if it is too much it defeats the purpose.....
Plus swimming is good for us too : )...which is good  bcuz I love being in a pool...lol....I am not a good swimmer...but enjoy the water activity, plus u have the resistance just walking around.

This is all the knowledge I have at this point.....sorry, I hope this is helpful and that teh PT u see knows more and u can add to this : )

Good luck
"selma"

[auntissie]

Thank you!  Already feeling like I will live through this.  Wasn't quite sure about it a few days ago.  Now, I have to find a doctor who knows what type of exercises a person with EDS and POTS can do.  With POTS, anything upright will make the heart speed, so it needs to be more vertical and with EDS, I'm not sure what is okay and not.  I don't think weights is right according to what I'm reading.  We don't really need to stretch, we're already too flexible.  So what should we do?  I also have the vein issues--EDS related probably.  I had leg vein surgery when I was 26 years old.  Severe varicose veins.  They took branches out.  Boy did that help the pain in my legs.  But of course, they are back.  Not near as bad though.  At least now I know why they are so bad and why I was the clumsy kid on the block.  Always spraining my ankles and bruising.  I'm to try to call the PT today.  Any suggestions for what to look for?

[selmaS]

Best wishes for a speedy recovery and rehab on the foot !!

Sorry I can't help with the drs in AZ.

"selma"

[auntissie]

Just moved to a new area and looking for doctors.  Got side tracked by the foot.  Got the staples out today from the surgery.  Say it will be over a year to recover from this.  Here comes the rehab.  Not looking forward to this adventure.  One of the girls on the Dysautonomia site here gave me the name of a dr. for the EDS and a neurologist who can help with the POTS.  Need to also find a heart dr.  Live in AZ.  Anyone know of a real good one?

[selmaS]

Hi...so sorry , wow u do have quite a bit going on all at once too....I also have a diff time knowing which condition is causing my symptoms.

I would like to ask if it is ok...have u been to a dr that specializes in POTS or EDS? This is on my to do list and wonder if u have gone or plan to?

"selma"

[auntissie]

Being new to this and just learning about the issues.  I have questions.  I recently broke my foot off my leg.  I'm overweight too.  I also have POTS which affects the autonomic nerveous system and the electrical system of the body.  So I have high and low blood pressure and pluse rates.  I can have my heart race up to 160 by just standing from sitting in a chair.  I feel I have the adrenal form of the illness because there is allot of flight or fight issues that come up.  But with the Ehlers Danlos, I HURT ALL OVER.  They had first told me I had Fibromylgia, but now feel that it may be both.  I am super flexible and have vein and circulation issues.  My legs and feel swell sooo bad and my fingers and hands.  I wear compression garments for the POTS, because it helps to keep the circulation better and the bp and pluse better.  Lots of blood pooling and swelling in the ab, from blood pooling with naseau.  I don't know what is POTS and what is Ehlers Danlos.  I was at first treated as if I have Parkinson's (for a year and a half),  I just got worse.  Then they thought I had multiple system atrophy.   That's when I went to Mayo.  Today, because of pushing myself around in a wheel chair.  I'm soooooo sore I can hardly move.  With what ever is going on with me ---I have severe weakness and tremors.  Sometimes my legs won't pick up and I have a head bobble and tremors in my arms and legs.  That's why the other diagnosis.  I think this part goes with the POTS.  Just trying to sort this all out.  Right now, I'm on pain meds for the broken up leg.  It makes the POTS worse, but it seems to help the other pains.  Any advice or info I can get will be appreciated

[selmaS]

Hi I just wanted to welcome u to the EDS group!!

Seems we r all looking for info, and since I am new to my dx also I do not have much info to share just yet.

Please feel free to add ur experiences as u encounter them so teh rest of us can learn and compare what we r going thru as well : )

"selma"

[auntissie]

lumina,
I recently found out I have Ehlers Danlos.  The type you and I have is the Ehlers Danlos 3 form.  It can't be diagnosed with genetics and is based on symptoms and past life experience.  You are consistant with the symptoms you described.  POTS also goes along with this as does Chairi.  They didn't offically diagnosis me with Chairi but my brain was 2 cm below where it should have been.  My research shows this can cause symptoms and some places call this Chairi 0.  It doesn't meet the critiera to be called trulley the problem but with some people it is a problem.  I'm just learning about these two things.  I have POTs too.  They are all connected.  Anyone got infor for me?

[selmaS]

Well with ne condition , there r diff ways it can affect us differently.....u may have more symptoms than she does, or ever did....I am sure while raising u she had some issues to deal with too, but, her's may not be to the same degree as urs.......

I wish I had an employer like that....I wish I still had a job...lol....but how nice to have an employer that is understanding ...wow.

[lumina92]

I couldn't agree more! I guess maybe because she doesn't have the level of stress and activity that I do she is better able to handle it you know?  I have three kids 2 are in school one in preschool. I am constantly getting someone ready for or driven back and forth to something! She works a job that is not very demanding and if she is in pain they let her go home.

[selmaS]

My mom has many aches and pains too, but was DX with fibro yrs ago and in  fact was told it was bursitis long b4 we ever heard of fibro...so she will not even consider going for more testing or think it is nething but age and the fibro.....

Let me tell u I also grinned and bared it and inbtwn I saw drs and none had ne idea of what was going on....all wanted to try to convince me I had anxiety and that was it....so I would stop going to drs and grin and bear it again...but there comes a time u can no longer do that....if ur mom can function , than I say great for her....it is when u can no longer function that u turn to sites like this for added support and the knowledge that u r not alone with these issues.

"selma"

[lumina92]

like you said things are "normal" for us but really not lol. She is not nearly as bendy as I am but now that I have a better idea of what is "normal" she is quite bendy also. Her hips are constantly going out and she has a bad back but nobody has ever noticed her bendiness. All I can say about that is that where we live we don't have any specialists or even half decent dr.'s in my opinion. Sounds like my mom and you are about the same age. I keep urging her to go in but she thinks i am being a hypochondriac. wish she was more supportive but maybe if her hips bothered her as much as my joints have been she would be looking for help too. She is old school, grin and bear it. the only thing she will go to dr. for is her allergy shots and yearly woman appts. so so stubborn! lol

[selmaS]

Yeah that is the biggest problem with these conditions we have since birth....all we have that r "symptoms" seem to be normal for us so when asked what symptoms do u have, we don't even see which ones we do have...lol....'

And u r soooooo right, there should be a course the drs have to take the entire time in med school on how to relate to their patients.....

Well, now u know u have even more in common with ur mom......how has she been able to go so long and not get dx?(I should talk I was 48 when dX...but it was not a lack of trying)

"selma"

[lumina92]

I agree the best advice usually does come from people who have experienced it. I don't think Dr.'s can have empathy for patients suffering sometimes. It is totally different when it is you going through something. I don't know if they learn anything about that in medical school but seems like with the Dr.'s I have met lately they sure could use a course on how to relate to patients! I was talking with my mom about EDS and the stuff I can do that is not normal and she was like "What are you talking about I can do that! That's not normal? I thought everyone could do that?!" I had to laugh because that's exactly what I said! So I am venturing a guess that it is her I get this wonderful condition from. Thanks Mom lol

[selmaS]

U r welcome...yes I have heard that a geneticist is one stop in this journey for EDS.....I imagine it depends on ur insurance if u need a referral or if u need some direction if u need to speak with their Ped......

Oh I know, I asked when is ne one on here.....I am always checking this site as I am on MH with 2 other forums...1 for chiari and 1 for GERD.....and I have the EDS dx and need more info and the best is from those that have it...straight from the horses mouth so to speak....

It is something that does get passed from the parents.....I was told most likely the moms side, but I feel my dad is the one with these issues...including my chiari dx.

No worries ask all u like...not sure if I can be of help to all the questions as I too am new to my dx.

"selma"

[lumina92]

Thank you Selma I am hoping my new rheumy will be able to help me! I also read alot about people with EDS  seeing a genetitist? Sorry if I spelled it wrong. Have you seen one and what exactly are they able to do for you? I am almost positive both of my daughters have it also. Do I start with their pediatrician to get referrals and such? Sorry for all the questions but it seems like you are the only one on the boards who is really replying to anyone posts. It seems kind of dead around here.

[selmaS]

Well I can relate to that type of pain....having it right now.....ugh.....stop by the chiari forum here on Medhelp and look at our Health Pages for info on Drs and what symptoms fit chiari.

Also u will see that many of us have gone thru many yrs and drs to get our dx.

I am so sorry u r having to also deal with this  issue.

http://www.medhelp.org/forums/Chiari-Malformation/show/257

"selma"

[lumina92]

Well I have had numerous dizzy spells, passed out a few times, my head and face feel like they are "asleep" i guess is the best way to describe it. I have near migraine headaches almost every single day and the back of my head feels like it is about to explode right off.

[selmaS]

I had a drop attack which is a symptom of chiari....I had no idea at the time, but the fall resulted in an injury that required surgery, and that surgeon sent me to another dr looking for lupus....in doing testing my chiari was found.

I know what u mean, there r too many drs with that attitude, and very few that r happy to have u informed.....

What symptoms do u have u feel r chiari?

[lumina92]

I am sorry to hear about your problems! I have been reading on this chiari condition and it sounds so familiar to me also. People think I am crazy when I talk about the way my head and brain feel. I wish I could find a dr. that takes me seriously. In fact the dr. I just saw had a cartoon on the wall that said "there will be an extra charge for annoying the dr. by self diagnosing yourself over something you read on the internet" I thought it was really offensive! They tell you to be proactive in your healthcare and then when you try to get more information on what is bothering you they think you are a hypochondriac! what did you say to your doc for them to even consider chiari?

[selmaS]

From what I am understanding is we need a rheumatoid dr that specializes in EDS in order to get the best and correct treatment. Also seeing a geneticist may be in order.

I have been having a problem finding a comfortable position to  lie on for sleeping.......I had decompression surgery for chiari in May and was told to sleep on my side would be best....well, my shoulder hurts so badly when I do, I have to twist my self that I am half on my side and half on my back in order to sleep and then I get muscle spasms in my back.....

I really feel the problem with many drs is they do not have enuff knowledge on all the conditions within a specialty and use poor judgement when they make light of something like this.....if in med school it was only glazed over like chiari is, then they all feel it is an incidential finding and so, we r double jointed...whoo hoo...but a dr that takes time to learn this area of the specialty will be better suited for us...too bad for all the others we have to see b4 we find the right drs....it is our loss of time and our patience with the med profession ...and a tendency to grow leary of drs in general.

U may be able to find a good PT that knows this condition, but u will have to make a few calls to do so.....

I pray u find the help u need : )

"selma"

[lumina92]

The Dr. I saw was a rheumatalogist. I have been treated by physical therapists in the past for IT band issues and neck problems but they never said anything about my joints being hypermobile. I think I was diagnosed with a hiatal hernia after my second daughter was born but I am not sure. If it is EDS why didn't that dr. offer me more help than tell me not to run, jump,dance blah blah....It sounds like I could have some serious problems with it and my pain is out of control. but she offered me nothing she even flat out laughed at me. Like held herself up on exam table she was laughing so hard when I told her my hips pop out alot. What the hell is funny about that?! It hurts so bad. Could a physical therapist help me? I want to know all I can so this thing doesn't control me! Thank you for your input!