My son and I have possible EDS Type 3

[protea]

I have suffered most of my life with joint and muscle pain.I also had my ankle fused when I was 19yrs old.I was eventually dx with Fibro a year ago and have been on lyrica ever since.I have had to have a hyst as I had severe endo.I had 7 surgeries to help with it.I also have IBS with constipation,I.C.,under active thyroid and adrenal fatigued. My PCP will not give me anything for the thyroid and adrenal issues as she thinks there is nothing wrong with me.I have 2 little boys aged 4 and 5yrs. I am constantly trying to keep myself awake.My 5 yr is already wearing ankle braces for pronation and stability issues.So both him and I are going to the gen for a dx.

I asked my PCP for a referral so now she will have to believe me.I am really hoping they give me something for the thyroid and adrenal issues.I dont want my son to suffer like I did.I will believe him when he tells me he is in pain and I want to help him.I hated school and now I know why.I was so tired I had to nap every afternoon when I got home.I would always get a sore neck and my hands would ache.My 5yr old has very bad constipation too and has the hyper extensive knees and can do the thumb to forearm thing too.

I am going to have our hearts checked too as my other son has many CHD's and has special needs but does not have EDS.
There is no point in my son suffering like I did.I actually just told my mom about it and she thinks we are just looking for something.It really makes me mad but cause I know that its possible that all 4 of my sisters have it and I want to help them too.2 of them have severe crohns disease and we all have arthritus in some form.

Just looking for support and any more suggestions.TIA.

[selmaS]

I had mine checked out, and would suggest it as a good idea....it is always good to have a reference point....if in the future u have an issue , need surgery...etc....

Many with chiari also have sinus related issues as well, and many r not checked so the HA's r not thought of as nething for yrs until an incident triggers them to worsen.....ask about a MRI for the HA's too if u can.

  "selma"

[protea]

I do get headaches but they are related to sinus infections that I get quite often.I have never heard of CHiari at all.

I am hoping to get a full workup on my thyroid to help me.I have stopped taking all the natural meds for my thyroid so that the gen can have an accurate pic when it comes to my blood work.I am so tired just dragging myself around and in a lot of pain.Not sure why cause my rhumy has increased my lyrica to twice a day.

I also have a tail bone or coxix that keeps coming out of place and I have to visit the chiro to have it put back.It is so painful that I cannot sit at times and if I do I want to scream cause its too painful to get up.It is really difficult to be like this with 2 little boys that are on the go all the time.

Would you reccomend having our hearts checked out too?I was thinking about it cause our other son has many CHD's too.

[selmaS]

  HI and welcome to the EDS group.

I am so sorry u had to endure for so long and were misdx'd like that...and now to have ur DS with the same issues....but he is lucky to have u to know and understand what he is going thru...not that we want neone to have these issues just to understand.

May I ask, do u also get headaches?...were u tested for chiari?

I was wondering as I have chiari and EDS....I also have tethered cord....and possibly POTS....I have to get back to the dr for more testing....just wondered if u had addition issues......

BTW- chiarians r prone to autoimmune issues like hashimoto's thyroiditis...so I also have thyroid issues and since u did too, I thought I would ask.

"selma"