Yesterday was probably THE worst day emotionally in our JIA jorney as a family — Mothering Juvenile Arthritis

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  • We started my two year old on it recently. I felt the same way. I even cried at Walgreens when I picked it up. They gave us the smallest needle possible and the buzzy bee. I hold her with a book so neither of us can see and my husband holds the bee and gives her the shot. She thinks the bee is hilarious and laughs and laughs. The first time she said ouch Everytime since she doesn't say a thing. And not a single tear!! We have not seen any side affects yet. I can't tell you how much I cried and worried over starting her in it and now I just feel relieved and hopeful that it will put her in remission! Good luck.

  • I got the buzzy bee on Amazon.

  • Thank you everyone for all your support and kind words and sharing all your experiences. Its so hard but I know if all you strong women can do it I can get through it with my girl too.

I have a couple questions for you guys Does anyone have the sensation that... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Good vibes and prayers for all of you! ! !

  • The eye twitching is called blephospasm and is treated by injecting Botox. My eye Dr has done this several times on my eyelids.

  • Have your b12 checked too. Before I started injections I had similar sensations.

There seems to be much interest in getting a good nights sleep and a general... — Ehlers-Danlos Joint Hypermobility Wisconsin

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  • I love the $300some

    serta memory foam I got at sams

  • Beth, I am glad you like it. I am not a memory foam fan. I get stuck and my neck and hips dislocate. I know that everyone is different. When I first got on with my life on, I was really hopeful. After a week I had to get rid of it. I now have a bed that has memory foam about 8 inches down. It's still too soft for me. I always wake up with a headache and my neck disjointed.

  • Both purple and Casper are foam I think

Ooooo Friday s here. Good Morning Lovelies and yep its Friday at long last — Osteoarthritis sufferers and rumatic arthritis suffers

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  • Totally agree with Connie Marjorie plus I am sure you would have done the same for someone else if the roles were reversed. I appreciate how hard it is to accept help though gentle hugs on their way

  • You also allowed a man to feel chivalrous and manly, you probably made his day.xx

  • I do now accept help when out and when its offered. At our local international supermarket there is a man there who sits outside playing an accordion and he helped me with my bags the other day, I always put a euro in his box and offer him a bottle of water, which he accepts....and while it feels like its giving in, its not. I'd be the first to offer help to anyone and now the tables have turned

Was wondering if anyone else out there with chronic Lyme deals with horrible... — Christian Lyme Disease Support

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  • Xxxxxxx Yzzzzzz are you doing lots of vitamin C and collagen (or bone broth) for joint support? Lyme really attacks anything that has collagen in it. :/

  • Cathy, I take a ton of supplements, vitamins, herbs, vitamin C included. But I'm not taking collagen. Is there a specific collagen supplement you recommend? Thanks!

  • Xxxxxxx Yzzzzzz bone broth - has collagen AND so many other nutrients - I have been reading how it helps repair the gut ( all of us with chronic lyme need to do that!!

Anyone ever develop infectious endocarditis with Osler nodes Osler s nodes... — Lyme Disease Support and Wellness

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  • I've had them about four times. Only my dr had no idea what it was. He had me tested for syphillis all four times. Needless to say it was negative.

  • I am assuming this is not your Lyme Literate Doctor. How many nodes did you have? Was he worried about endocarditis?

I m sure this has been asked here before but does anyone here do any online... — Ehlers Danlos Support In Your 20 s And 30 s

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  • I'd like to know what company it is that you work for, because in my research for this, they all seem to be the kind where you need to host parties and such, so I'm confused as to what kind of MLM you could be working for that would allow you to work only from your phone. Thanks for the reply, by the way.

  • Mandi Hill I work for Younique which is a naturally based makeup and skincare brand. All of our parties are done online through Facebook groups.

  • This is kind of a general answer but depending on what companies are near you, customer service call centers are a good spring board. Almost all banks and credit unions have departments that wouldn't necessarily require specific degree, fraud (entry level) departments and collections... None of which is fun, but pays the bills... If you'd be interested in getting further education, payroll is a good avenue to navigate. From what I understand, most companies operate through one or two common payroll software programs ...

Photos from Janis Remy's post — Dupuytren s Disease Support Forum

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  • Janis Remy that is a large nodule did it pop up over night? Do you think it I'd DD?

  • The lump on the outside of my knuckle is from OA, but the little one on the inside toward my nail is the tender one. It popped up overnight a while ago.

  • I hope it isn't DD.

Saw Dr. Tortland today and I am going to paraphrase to the best of my ability — CT Zebras Ehlers-Danlos CTD Support Forum

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  • Avon office closed. Glastonbury. D.O. Regenerative medicine. Prolozone, PRP. He is a great diagnostician and takes insurance for office visits. I get tendinitis frequently and my ortho and physiatrist said I had bursitis and he said it was tendinitis and he was right! Prolotherapy was severe pain for me and i would be in a severe flare for a week but helped my lumbar vertebrae from twisting. Prolozone isn't as painful to have and I feel better right away! I know everyone is different.

  • Is prozone a shot?

  • Some of this sounds like AMPs... if you hit a wall with your therapies, you might consider it...

Hey ladies ive missed u havent checked in in a while but i need u all to... — The Real Housewives of Lupus

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  • Praying for you...but make sure to take time to heal if you need it. I had the same symptoms when I had heart failure. They call it the two pillow rule. If you can't breathe or start coughing when laying down with less than two pillows you should be seen. I almost died because I waited too long.

I had an important test last week very important it could mean surgery or not — Christian Lyme Disease Support

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  • Praying for you that His voice will be clear.

  • Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding.

    (Isaiah 40:28)

  • Dana continues prayers... Have you heard from the Dr?

Does anyone have a link to info about how EDS affects your digestive system — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Well, apparently I have stones...

  • :( Sorry to hear it. As far as surgery goes, it's one of the more routine ones, especially if they can do it laparoscopically. I only have tiny scars from mine, but it was *really* painful to recover from. I wasn't diagnosed with EDS at the time, so they didn't take any extra precautions with the sutures and my belly was basically a massive bruise, and they decided I should only need pain meds for 5 days! That was awful, they made me go to the ER to get more meds. Thankfully none of the wounds opened up, I just was super bruised. I'd make sure your surgeon is familiar with EDS and the different suture methods that might be better for us to minimize scarring/bleeding and the risk of wounds opening up again. They used glue as the sutures on my skin and the scars are barely visible now.

  • Until then - avoid high fat meals. The less fat, the less pain you will be in. *hugs*

Does anyone have a link to info about how EDS affects your digestive system — Ehlers Danlos Syndrome and the Cusack Protocol

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  • I had my gallbladder removed by keyhole surgery and was such a relief! Hope you get some pain relief soon

  • Good to know.

  • The pain hasn't came back. Do you think the big stones passed on their own? Hence why I got the pains in the first place? Cause they were trying to pass?

I m pretending to be sick Wow I had no clue Let me stop pretending that my... — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • I wish people that's say that could walk 5seconds in our soft boots because god knows they couldn't take much more.. I hear allot from my fiancee and parents "it could be worse" God I hope not. It makes me want to hobble away from them and never look back... gentle hugs to you. You definitely have people here that know you are not faking and we are all praying for each other..xoxo

  • Well Sweetie, I am using my illness to be the center of attention because it always has to be about me.

    Don't let people bring you down, Honey. It's harder to keep that negativity in your life than it it to delete it. GET RID QUICK! Trust's very liberating, and relieves so much stress. Won't help physically, but it does wonders mentally!! Prayers that you feel better soon!

  • I'm at my wits end with people around me lately. I get told my pain is my catch all for everything its you excuse for everything , I don't do a dam thing all day, but I am fine enough to go to my parents every Friday to visit (I've done this for 20 years!) I do relay for life each year just fine but how would this person know? You can't feel that nauseated all the time, if you got up and did things like clean the house wash the dishes take care of the dogs you might regain muscle to help your legs not hurt. If you went to bed at a decent time you could get stuff done during the day, it must be nice to take a nap or stay in bed all day, Your always hurting, didn't you just have a flare up? Why didn't you go to the store like I asked, why haven't you started sorting and packing shit yet? (We just found out less than a week ago we are losing our house) you don't see me dwelling on it, (I'm the one that had worked on this since last august trying to save it) if your anxiety and depression is so bad that you need those meds then you need to see a psych? Um I already do duh!, well I hurt too but I still have to go to work every day, you don't work so there is no excuse for you to just be plain lazy! I hurt all over yours is just in certain places so it cant be that bad. Sorry just a few ignorances I've dealt with this week and gee its only Tuesday morning. Oh I can tell with will be a rip Jessica's ass for what ever I want kinda week. Wishing everyone a tolerable pain week hopefully free of ignorance

Having a flare probably caused by taking my canoe out and paddling a bit — Costochondritis is a pain in the chest... literally

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  • Same bost. Dont give up. I find wearing a onsie with light compression helps. Acupu helps, chiro also gave me stretches and has me taking b complex and magnesium.. they did find what thet think is lipoma under ribs so surgery in a weel. Scared. Might be tangled in nerves.

  • I don't think there is an answer. You have to learn to live with this condition and find out what works for you to keep it under control... It Might be that canoeing will aggravate your inflammation. If you google 'costochrondtiis' you will find a medical study done years ago by doctors on a female canoeist and all the different methods tried in improving her condition. I'm in UK, top rheumotologist I saw here said I was very unlucky, confirmed lots of young people suffer it (I'm older) and,in her opinion, it's caused by a virus (when I suggested wear and tear to the body) but no one really knows.

  • Try Magnesium supplements they have made a big difference to me, been at levels of 2-3/10 for 5 months now, which is great after 2 years of constant pain. Does flare after canoeing but then settles quickly, I am not sure if mine was caused by a virus but physical activity certainly aggravates it.

5 weeks post op and feel the same as before Walk well and then bam the same... — Osteochondritis Dissecans (OCD) Support

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  • So sorry you are feeling so frustrated. Try to be patient with your body and it's healing time. I felt the same as you, 6 weeks post op, and I thought I wasn't progressing as well as I thought I should but each person it different. Don't push yourself. Give yourself plenty of time to heal. I'm almost 4 months post op now and I still have days where I just want to pull my hair out. Keeping you in my thoughts and prayers.

  • Hugs and understanding

  • Glad to read that you are walking. We totally understand how you feel...

I got my diagnoses for Sjogrens in 2013 My rheumatologist said during my last... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Plaquenil doesn't really help with pain - just helps stop progression .

    Are you on LDN ??

  • A reminder about Muscle Relaxers.

    Muscles need Calcium to contract, and Magnesium to relax. Simple as that. I suggest 5mg of Magnesium Malate per pound of body weight, as a starting point. ibid=16575

  • I just wouldn't take magnesium malate at night - it is energizing

I have been using the Cusacks Protocol for 2 weeks now minus the L Arganine — Ehlers Danlos Syndrome and the Cusack Protocol

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  • I will try lol.. Thanks Linda - think your FB skills superior to mine .

  • Haha, I learned the hard way, by asking for help.

  • Forgot a step after info you have to hit files then click on protocol. See no expert here.

I m miserable Every joint I believe my hair actually hurts It s hot and nasty... — Project Lupus 365 L365 Home Of The Future Lupus 365 Foundation For Hope

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  • How are you feeling now? Sending positive prayers your way.

  • Hi, been sleeping and a lot. Thanks for checking on me. I think I'm feeling better, not really awake enough to tell yet. Gonna eat and watch tv on the couch. Hope you are well :)

  • Praying for you Jessica Thompson Ford

Thank you to everyone who joined us tonight in Ivoryton Lu Lupovich our most... — Bee Venom Therapy for Lyme Disease

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  • This was an amazing event. I can't thank Ellie enough for this and everything that she does. She is an extraordinary person!!! I learned so much tonight and I am very excited about what I've learned!

  • Yay for Connecticut !

  • So great to attend and gear your story Ellie Lobel. Looking forward to the bee life!

Since having Lyme the last 3 years I ve suffered and had the worst days of... — Christian Lyme Disease Support

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  • Beautiful!

  • It's a sign of spiritual maturity if we get to that place where we can rest in the Lord even if he doesn't heal us! Thanks for your testimony!

  • It's true that our suffering can bring us into a closer relationship with him, since this happened his promises have never ment so much. Thank you Cristie .

Just curious if anyone else here is hla b27 negative I ve been diagnosed with... — Living With Ankylosing Spondylitis

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  • I'm negative as well.

  • Count me in.. Now the lump in my neck bothers me a lot. When I just saw my Dr, he said that was part of the disease. Well just slap a saddle on me and I'll charge for camel rides!

  • This is a destructive disease indeed

Lupus doesn t care what you are stressed about the police shootings have me in... — The Real Housewives of Lupus

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  • I turned off the news and FB only to hear now about the shootings in Dallas. :( We live in a violent and hateful world. I still have faith that here are loving people out there.

  • Teresa thank you!

  • Keisha Brown, my heart goes out to you and all who love your cousin.

I need help I have had vasculitis since 1992 and I m having digestive problems... — Vasculitis Foundation Discussion Forum

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  • Yes. See Dr. Allen at Duke in North Carolina.

  • Do you go there Heidi Noyola Lydic and if so do you have a number ? Thk you so much for your help .. :) is he nice and friendly ? I like the ones who understand us and is nice. Well I thk you know what I mean .. Some can be not so nice or don't want to help .. I'm getting stressed out.. Having issues with alot right now ..thks again ...

  • Thanks to you all .. I'll sure tell my regular doctor an see if she can get me in faster. I'm a person who wants a doctor who cares an is so nice. Some I have run into are not so nice or won't try an help. Gets stressful at times. Thks to you all again ... Means alot ..

Does anybody else here have weakness on one side — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • EEGs only measure about 1 cm circumference from each electrode.... So if your seizure activity is not within the first cm of the outer part of the brain it will not get recorded. Also, there are no electrodes put on the cerebellum or base of the brain. This leaves a lot of room for seizures to occur without being noted

  • That sounds a lot like a seizure. The sad thing is that a lot of people don't think things are seizures unless they are the shaky ones

  • Yeah, absence seizure was mentioned but I don't quite fit into that one either...

Does anyone have any history with the newer drug Nucynta ER I had been on the... — Scheuermann s kyphosis

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  • Withdrawal. When I don't take my gabapentin I can't sleep no matter what. I toss and turn an try to fall asleep but my body just don't relax to actually fall asleep. Sound familiar?

  • And I don't mean I didn't get a good sleep that night, I mean literally no sleep.

  • It's not withdrawal for me but the symptoms are extremely similar. I had no problems transitioning from the patch to Nucynta until 2 months later. That is a very good way to describe how I feel though so I will mention that to explain to my DR. I hadn't thought of another way to explain other than the restlessness.

Hey guys I had an 82 degree curve and had surgery a month ago The pain is... — Scheuermann s kyphosis

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  • Ginger Hyatt Connelly thank you

  • of course! That is such an honorable job and to want to go into these days is nothing but courage and respectable. This back thing, you got it. Just take it slow and easy and you'll control it hopefully. I really do hope it works out for you. I'll pray for you for sure!!!

  • Ginger Hyatt Connelly I'll pray for you as well appreciate the kind words

Can t sleep tonight again. sweating so much so sitting in front of the fan — Takayasu s Arteritis

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  • Sorry to hear that, usually they reduce prednisone super slowly strange they didn't do it with you....hopefully you will fell better soon with 40mg!

  • Yep it happens

  • They did when I got diagnosed but I'm going lower faster because I'm having so many side effects from them! My vascular surgeon told me I didn't have any veins and arteries that could be used to do a bypass so I didn't need to see him anymore xxx

Hi Gang. I m sure this question has been asked before so I apologize in advance — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • The emergency field won't bother? With what?

  • Xxxxxxx Yzzzzzz in your phone make sure you list your emergency contacts with ICE in from of their names. THey will look in your cell phone for who to contact and that makes sure they call who you want them to

  • Michael, why don't you just post the PDF?

I d love to hear from LD sufferers have had RT treatment on nodules that are... — DART - Dupuytren s Advocates for Radiation Therapy

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  • Well, it seems I did actually have what we believe was a new nodule on my left foot appear shortly before beginning 1st round of RT last month. Too early to tell, but if you think to ask again in 6-12 months, I may have an answer from my experience.

  • I hope you are wrong about the new nodule, Cindy, or if you do have a new nodule, that it causes you no problems.

  • Thanks Kathleen, if it was a new nod (and I think it was) we got it in the treatment field for RT. So....we'll see.... so much of this disease is wait and see....

I am interested to know of members experiences who have both Dupuytren s and... — DART - Dupuytren s Advocates for Radiation Therapy

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  • Thanks... My grandson with trigger finger sleeps with a brace.. Not sure if it is helping..

  • Straight from the expert on DD! Thanks

  • Do you recommend physical therapy and trying to straighten my hand after RT?

Please remember tomorrow is the release date of the online documentary Trial By... — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • On Vimeo it says that I can view it for $7.99

  • Thats right. You are renting it. As there was barely any funding for this. Just like funding for us. Enough people dont know about it so there is no funding for us. This is our best option to let people know about our suffering. If enough see it on here major networks can pick it up. People who know the name are more willing to donate for reserch. We need to start somewhere. Lets get a conversation going. Say something. This was a labor of love. He started this bc his mother has this horrible disease. Then he came across others & realized quickly attention to this was long overdue & badly needed. A fair amount was out of pocket. If somebody was willing to go to all this trouble for us, I am going to push it. This is a huge opportunity for us. I am grateful. 1

  • ok so I will rent it

Hi everyone I ve been a member of this group for quite a while I have... — Ehlers-Danlos Syndrome Vermont

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  • So I'm hearing you say that she does bodywork for you? I don't know any coaches who incorporate bodywork into their coaching practice. Where was she trained, may I ask?

  • I'll do it!

  • Cara L. Sachs, private message me and I will give you Kerry Ann Munroe Madden cell phone number

Okay So I just need to go on a small rant sense no one else seems to... — Behcet s Disease You Are Not Alone

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  • Straight up? Then they're not the "friends" you want around anyway! Be done with'em! Or get with your bestie from the group and tell it to her or him like it is. If they can't get it from your heart, then move along to bigger and better things, Beautiful. Life is WAY TOO SHORT! If I could have learned that in my younger years, I'd have been so much better off.

    However, Behcet's is hard for us and tons of doctors to figure out. We can't expect folks to get it.

    But, they're thinking you're faking to get out of stuff and the saying hurtful things, treating you less than, that's bs, in my humble opinion.

    Blessings to you, Beautiful. Hang in there. <3


  • People are not all understandinh i have a friens who has been a deer friend for many years but lately things have changed between us its sad i know we have given up so much normalcy that the last thing we want is to loose our friends too but the fact is its the life we now have not by choice either