I m so glad I found this group OCD of the talus I had surgery January 21... — Osteochondritis Dissecans (OCD) Support

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  • I am 39, it feels pretty good, the pain I had is gone, but I have pain now on the outside of my ankle which, I'm thinking is just from muscle/ankle weakness. Six years ago a twisted my ankle my dr said he saw something on the xray, but I was going on vacation he said if it was still bothering me when I got back we'd do an MRI...I wasn't doing any type of exercise at that point so it felt fine I never went back. Fast forward 5 years, I start running training for my first half marathon everything was fine. Last year I was training for my second half I was walking through the mall and my ankle gave out...I was so close to my half I sucked it up taped and ran anyway. I never got it checked out, my running dropped off it felt fine, then in august while training for half number three got up to 9 ish or so miles and the pain came back. But I was so close to the race I pushed through...then my husband and sister said I need to get it checked out. Went to the ortho two weeks after the third half and he found the OCD, he said this is not a good injury because it won't heal and has to have surgery if I want to run. So I had the surgery in January 21, I followed all the rules for recover. I am hopeful that'll I'll run again even if just 5 or 10k...I'm really curious if thinking I'll be running by the end of May is crazy...I registered for a race while NWB...that might've not been smart...

  • Thanks for sharing! Your path sounds similar to mine. It may not have been smart but I completely understand. I have been active but new to running. Now I have the running bug and can't stop. Hope your race goes well, please keep me updated on how things are going. Hoping for the best for you and a good race!

  • Thanks...yeah I never was a runner...I always wanted to be but never knew how to start, I always felt you had to just go run 3 miles...and I couldn't so I'd stop. A friend trained me starting with a quarter mile then he would add on every week...I'll probably build back up the same way, but I can't even physically run...I tried the other day I got about 5 feet. I don't know if it's fear of rein jury or if I really can't do it. I'm going to see a physical therapist next week, that is also a runner...I'll let you know what he says.

who would it be best to c to c if he has eds gastro or rheumatiod thanks for... — Ehlers Danlos syndrome type 3 UK forum

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  • I know he used to see children, sorry Karen if im wrong, didnt know how old ur son was..Xx

  • No worries Bren Heenan-Hodges thanks anyway x

  • It sounds like a referral to one of the London hospitals might be your best bet. A gp can do that especially if u do the research ;-)

I am mom to a daughter of asian decent just diagnosed with systemic lupus — Lupus SLE (systemic lupus erythematosus) Has An Impact On My Life

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  • *meds

  • Hang in there...at least she is getting the treatment she needs now...

  • Xxxxxxx Yzzzzzz how old is your daughter? Also if she is younger feel free to personal message me I also started with a kidney biopsy and the monthly infusion I will say between the prednisone and infusion I had my hair thin and lost a lot of weight

hey all I have finally found someone who may help me they are on the ILADS... — Lyme Disease Survival Wellness Forum

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  • Definitely!!!

  • i dont understand how insurance can refuse to treat people for a sickness that is documented. if this was cancer and we were refused treatement the whole wold would be ticked off. i dont think the world knows what is going on with lyme, and so many people think that just because it is not affecting them they dont care if other people are treated equally. i dont see how they can not care.... lyme is epidemic now. it will happen to them or someone thy love at some point

  • You are so right, Angela!

Hi everyone I ve been waiting to post something because I was afraid to jinx... — Vasculitis, Pregnancy and Motherhood

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  • Congratulations! Wonderful news!

  • Thanks everyone for all the support and well wishes. It's great to know I'm not alone in this.

  • I know kidney transplant and pregnancy there isn't a lot of info if you have questions let me know. I did a lot of research and trial and error unfortunately.

Jessica 16 went to a concert last night and somehow forgot she has Chiari and... — Reflex Sympathetic Dystrophy- Need a friend who has R.S.D

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  • Thank you Carol Smith. I was thinking she needed a brace. That is probably the only type of brace we don't have. She is in quite a bit of pain from the neck injury, but the TMJ pain is over. She is in the middle of rehearsals for a huge program at her school right now, so she really doesn't have time for a flare up. Praying she wakes up back to normal tomorrow. Thank you!

  • Hope she feels better in the morning xo

  • Xxxxxxx Yzzzzzz ... how was Jessica's day? Is she feeling better? xo

Hello Thank you so much for the add I am wondering if there are any women on... — Antiphospholipid Antibody Syndrome, supporting each other on our journeys

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  • I don't like to give religious advise ... But pray... With god ... All things are possible !!!! Believe !!!!

  • Welcome to the group, and very sorry to hear of your losses.

  • Thank ya!

Has anyone applied for a blue badge for their child We had one as my daughter... — parents of children with hypermobility syndrome

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  • We filled out the new form for DLA which states about conditions not being all day every day x

  • Applied and got turned out as they say "it is not a permanent condition and it does not cause walking problems". Ahem.... I beg to differ as I am sure you all do on here!! I have appealed and we shall see. I have also put in for DLA but not heard yet about that. I understand they both write to the physio. The one who has met her once or twice and told us to "learn to live with it".

  • My 16 year old has Higher rate disability but low level care. She has blue badge and free bus transport. She has received her provisional driving license and has started lessons already. Due to her regular dislocations she is entitled to a mobility car as well.

    The blue badge should be accessible to all that cannot walk more than 25 meters.

I was reading a recipe for almond pancakes of pinterest the recipe says ground... — The Low No Starch Diet for Ankylosing Spondylitis

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  • I grind slivered almonds in a coffee grinder, I find it works great if you don't need a large amount.

  • That's awesome! I tried that and made almond butter by accident one time. LOL

  • He,he, yep you gotta know when to stop. Also I pick up the grinder and shake it as I grind otherwise there still be some larger bits.

We Finally saw O t the other day and has referred my little guy over to Physio... — parents of children with hypermobility syndrome

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  • Hi Hun they have given you the impossible task of slowing a toddler down!!! It may be worth getting in to a routine of warms baths and then massaging his legs as part of his bed time routine. Maybe watch him for any change in his walking to give you a hint he is in pain xx

  • I know its seriously hard, he just don't stop he also has development delay and poss asd he has no pain threshold so pain don't stop him, have found his knees go red and his feet turn more inwards when he is tired, hms is all new to me and the more i read the more confused i can get lol,

  • Hey, my daughter has trouble picking up pain, she does but not till its really bad. Thankfully she is getting better at this. She has a number of things that tell us what is going on. When she was younger we had a box of exciting quite time play, like play doh, shaving foam (this stuff is like magic to her, as is sudocream and paint!! anything soft that she could rub on her legs was an instant calmer!!) we still notice now, if she pulls on my arm when we are walking she is tired. Her feet pull in when her legs hurt, her bum pokes out when her legs hurt alot! If her legs hurt i happily mix her a pot of paint and stick her on some news paper, self massage!! :-)

Does anyone ever get the sensation like your heart is skipping or jumping a... — Costochondritis is a pain in the chest... literally

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  • Cat I too take an echo stress every year and dr said they are real but nothing to worry about. Still they are scary and it's hard to ignor them .

  • Thanks for the comments everyone. I actually feel fine now. These flare ups are something we all have to get used to with this kind of condition, and sometimes they can be worse than other times.

  • Feels like my heart is doing a summer saw

RANT AND QUESTION — Osteoarthritis sufferers and rumatic arthritis suffers

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  • I just moved , really it nearly killed me, even with a removalist to do the heavy work still recovering and it was Feb up and down stairs ..good luck sounds like you need it, even someone to watch your little one would help xx

  • For all those wondering...Turns out I have another moving date. More work is to be done. So I will be moving this Friday, or Saturday. May have some help *fingers crossed* :)

  • Vary good

Hi I did an interview via skype this week with the Vasculitis Foundation about... — Takayasu s Arteritis

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  • Hello folks. I'm going to start digging into editing this week and next. Response has been unbelievable. It's heartening that so many people want to share a story about TAK. If you would like to do it, please contact me via Facebook, or at ebecker@vasculitisfoundation.org

    Thank you

  • by the way...one thing that's really nice about these videos is that we can include photos you'd like to showcase in your story. Maybe it's a family picture, or you doing your hobby, or whatever you feel is part of your story..we will incorporate photos into the final video

  • I did this as well and it was a lot of fun. We need to build awareness, and this is a great way to do so...since we all have a different experience with TAK it will be great to see all the similarities and differences. :)

What I m finding is I end up dissapointing too many friends when I say I will... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • Im in NY. Gorgeous out....the old me would be talking a walk. My knee wont let me cause the horrible pain..

  • cold and wet here in Liverpool England wish sun would shine feel better when can sit in garden .

  • Bring on the Scouse Sunshine eh Irene!!

Another question how do people find flying I m due to fly in 10 days and my... — Costochondritis is a pain in the chest... literally

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  • I fly with it. I sit forward and hubby rubs the back. For some reason, that helps. Good luck.

  • I was worried about flying as I wasn't sure if the pressure in the aeroplane might make it worse, but it didn't I managed ok just keep stretching out. I think its actually worse in a car than an aeroplane x

  • Haven't tried it yet.

ok a question for the ladies. last night I discovered I am producing milk — Costochondritis is a pain in the chest... literally

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  • Same thing is happening to me. Did you figure out what it was Michelle Amethyst

  • The dr said it was caused by costo after sending me to have an ultrasound on my breast but a few months later i fell pregnant and misscarried and again had milk. So i realised that this too may have been a miscarriage

  • Sorry #LeesterHart MPS has to do with your muscles. I think they go hand in hand. Here is a link to read.

    http://fmcfstriggerpoints.blogspot.ca/2010/10/cost ochondritis-vs-myofascial-trigger.html?m=1

Not Vasculitis related but sometimes I miss being just the Big Sister to my... — Vasculitis Social Forum

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  • Gentle hugs, Layloni.

  • Hugs, you stepped up to the plate and your passing the test. God knew you would do a better job than your mom could at the time so he sent you a special message to help. In my eyes this makes you guys extra special.

  • Your taking on an huge responsibility and doing awesome at it. :)

Does anyone else see a Chiropractor for their Sjogren s and Chronic pain — Sjogrens Sister s Support Forum Private

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  • Ive been seeing a chiro for years. You just have to find the right one for u. Mine is brilliant but very expensive more than my insurance.....acupuncture with a tens machine is fantastic....goes much deeper into the muscle

  • I go to one, and I love her!

  • Yes. Need her!

The changing of seasons can often heighten allergies We find running our HEPA... — Christian Lyme Disease Support

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  • I cant be around perfume. I have to tell them i am allergic and move away

  • Xxxxxxx Yzzzzzz, Unfortunately there was no where for us to go. We moved over in the pew as far as we could go. So I just kept fanning myself with the Sunday, bulletin. I felt badly because the elderly woman was a real sweetheart.

  • I know! I have been there in church and next to an elderly woman and i smelled her perfume in my nose for days !!!

I have a question usually I have the answers but this is one I have no idea... — Sjogrens Sister s Support Forum Private

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  • Today its gone...and I hope it stays away. Elizabeth Massengale, no serotonins for me either, I am one of those that reacts to everything. May go back to a low dose prednisone since I've been off it completely for several weeks, things are showing up again.

  • Have you tried any/many DMARDs? I'm pretty reactive to a lot of commonly prescribed drugs (I took 100 mg of gabapentin for four days and knew I had to stop it because of debilitating depression; I only took 2 doses of Prozac before it made me want to hurt myself), but I'm doing extremely well with injected methotrexate. NO side effects at all, which pretty much doesn't happen. Sometimes it seems like, for me, the higher the likelihood of side effects, the fewer I have.

    I'm so glad it finally went away! Definitely try the Vagisil trick, though -- that stuff is my new best friend.

  • 5 years of Methotrexate, the last three the horrible side effects became unbearable, fevers, chills, bone pain..now they don't want to even try any of the others. I will try the vagisil, also just got a sample of a new similar product from the Sjogren's Foundation, might try that as well. I have a lot of organ involvement so I am limited on what I can take.

Hi gyys thanks gor the add have been wotking with rheumatologist Was diagnosed... — Living With Ankylosing Spondylitis

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  • So sorry hon that you have it. I was dx'd in pretty much the same manner about 3 and a half years ago. Sacroiliitis led to the dx and I too have had symptoms since about 13. I wasn't diagnosed until 41 yrs of age though. Best of luck to you in your new journey. It will never prove to be boring :)

Off and on over the last few years and more recently over the last few months... — Children with Scleroderma Morphea Support Forum

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  • He does have allergies but I never thought of yeast, I will definitely bring this up if were back at the Dr's for this one-- Thank you !

  • hi Kathy - Jen complains about sore throat at least x 3 monthly, but it never lasts for more than 2/ 3 days - we find gargling with apple cider vinegar helps.

  • Do they just do a strep test or run titers? There are a couple titers they can run