When is joint popping an issue I mean throughout my day every day a few joints... — Butterflies - Lupus Survival Forum

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  • One of my bosses used to get so irritated because my ankles pop when I walk. :/ I have a lot of popping and cracking in all of my joints, but my ankles get the loudest.

  • I think that is normal for us. I have horrible arthritis and spurs in my hips and feet. I pop like Rice Crispies sometimes, and other times I don't. My doctor says the more noise I make the more immunosupression I need. In my own research, there is nothing consistent....it just says that when arthritis is present, the grinding of the joint will cause popping....

  • my neck pops alot but i had a fushion and now theres spurs and arthritis

I have been seeing a holistic chiropractor for a week 4 times I have been... — Butterflies - Lupus Survival Forum

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  • good luck with that! please be cautious though and keep your rheumy in the loop. Probably should still get frequent labs/urine to make sure not deteriorating after off the meds. I would like to lose some of the meds, too but not at risk of further organ damage. Everyone's situations are different. I also find chiro adjustments extremely helpful...have far less neck, back, hip pain when see him a couple times a week. It is just difficult to get there. good luck Lisa! keep us posted

  • My rheumys words....no need for labs off the meds. Said the meds were the reason I needed labs. Idk. Thanks!!!

Has anyone had an EMG test and if so does it hurt Due to numbness in my hands... — Sarcoidosis Online Sites FORUM

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  • A lot depends on who does the test but not so bad.

  • I just had can EMG 2 weeks ago. Not painful but as others have said, depends on person performing test.

  • slightly uncomfortable however will put your mind at ease.

Just wanted to acknowledge that Eileen Propp celebrated her 42nd birthday on... — Cryoglobulinemia Vasculitis Organization (CVO)

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  • Happy Birthday Eileen! We have a lot to celebrate ! Take care and find time for yourself .

  • Aww, So sweet Marianne Vennitti. Thanks Kelly Howard & Frances Rodrigues. I am thrilled to be able to sit at my desk today & see your messages.

  • Just call me Marianne anytime. You have my phone number still and my private email? Take care, Kelly Howard

Hi I am looking for info for a friend s 13 year old daughter She has... — Scheuermann s kyphosis

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  • Hi Carrie!! My daughter is 14 and is having the surgery. Think it depends on the dr. Sweet of you to look into it for your friend. :)

  • My daughter was 15 when she had her surgery and had almost finished growing. She waited nearly a year (even tho she was classed as an emergency) for her op as her surgeon wanted her to have finished growing 1st. He was not prepared to operate on her whilst she was growing as he said that her body could still change after the surgery, hence the long wait :-/ HTH x

  • I am 15 and was told that they like to wait until the patient is finished growing. (I am) It seems like girls finish growing around 15-16. I have not yet had surgery. They are having me do physical therapy... I have yet to see any help from it, as I'm still experiencing pain but I think its a good idea anyway to strengthen the spine. I like to add heat, some like to add ice, to my back or hot baths/showers.

    I don't know what her school schedule is like but I would also see if there is some way to talk to her teachers and to see if they care if she gets up and moves every hour. My pain is the worst in school.. but moving around gives my back a little relief from the constant sitting.

    Hope I helped & best of luck to her!

My doctor is considering Rituxin but at my last 3 visits I have had a low grade... — Vasculitis Foundation Discussion Forum

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  • WG: I have -- with a spinal infection and 7 wks of home IV antibiotics.

  • Yes, immunosuppression puts you at risk for fungal and other types of infections. Infectious disease docs work hand in hand w/rheumatology and immunology at my daughter's hospital. Hematology, too. CMV is one thing they always seem to test for, I can't think of the rest. Either way, best to get it checked out!

  • I have when they couldn't figure out why I was having trouble breathing, I also had 4 or 5 other new specialists none of which found anything. That would probably be the best doc for an immune suppressed person who might have an infection to go to. Hope they get it figured out so you can move on to the next step

Question for those of you on rituxan. Do you also take a daily medication — Vasculitis Social Forum

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  • I have asked several times if it was wg..That is why she is doing so much better since RTX. it's like you have to go around the wheel to get to a point of control. I hope she can keep taking the Cellcept..she is also getting IvIg monthly, solumedrol right now monthly with it. But 5mg pred will stay that dose for a little bit.

  • I take Cellcept

  • Her Cellcept dose right now is 750mg twice a day. She has to eat good or it will upset her tummy.

Well ladies as I promised Im giving an update after the Vitamin Infusion I had... — Sjogrens Sister s Support Forum Private

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  • wow...thats great news. Please keep us informed, so far so good.

  • I'm so happy you are feeling better! :-) I see others discuss infusions. What is this referring to as the treatment is a new concept for me? Try not to overdue things because you're feeling better!

Well Systemic Arthritis strikes again It s been some time since Megan has had... — SJIA Systemic Juvenile Idiopathic Arthritis

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  • I know right. It's so frustrating!

  • I feel for you Susan Caldwell and megan...hugs and hope this passes as quick as it came on

  • We will pray that Megan feels better and that spring hurries it pretty face

We only went down. 5mls on steroids for two weeks and Emily s WBC has doubled — SJIA Systemic Juvenile Idiopathic Arthritis

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  • Xxxxxxx Yzzzzzz, it took us a whole year to wean Brooke off steroids. We started out dropping in .5 increments, but she would always flare. The dr decided to try .25 increments and that seemed to work. We would do each increment every 10 days until we finally weaned completely off of them. We did have to raise the Kineret dose once, but after a few weeks we dropped the Kineret back to the original dose.

  • Thanks friends. The Rhuematologist called me back and she said if Emily doesn't have simptoms of being sick it's SOJIA at work so we aren't weaning, but we aren't going back up either. We may switch back to kineret too, but we are waiting two weeks to see where the WBC goes. She also told me it takes a long time for some kids. I am at least glad we've made it this far in a year.

  • my son too has been on and off steroids for over a year now and we could always only go down to about 4ml and a major flare would occur....finally after starting the kineret he is now down to 1ml and still decreasing .5 weekly...hopefully only a few more weeks. Good luck to you all :)

WOW been trying to go back to work after being out since April Just found out... — Vasculitis Foundation Discussion Forum

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  • Xxxxxxx Yzzzzzz I feel like they watch me also and the position they put me in I told the HR I feel like they are sitting me up for failure.

  • Xxxxxxx Yzzzzzz I just go to work and do the best I can the way they want it and then I go home. I follow the rules and make sure I meet my goals in hopes they won't say anything to me. That's all any of us can do in situations like ours...do the best you can.

  • Xxxxxxx Yzzzzzz and Jennifer L Zsido keep a diary of events and ask for everything in writing. My 2c.

Wow so you live in San Deigo I ll be leaving Boston tomorrow to San Diego — Cryoglobulinemia Vasculitis Organization (CVO)

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  • Will do call you when I get settled in. Don't worry about how you look I've looked bad at times also. Shoot got to go Logistics call.

  • Thanks, Susanna...hope this prednisone time goes by fast and I get get back down to a low dose for my PMR. Maybe that will go away with the rituxan, but I doubt it.

  • look forward to your call.

I woke up at four am because I had a squeezing pain on my left side Went to... — Ehlers-Danlos Joint Hypermobility Wisconsin

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  • when you say left side - was it your chest or was it leftish center? I get really bad esophogeal spasms (usually out of nowhere) and they feel like heart-initiated pain. They can last for days sometimes - they only thing that helps with those is muscle spasm meds - esp. Zanaflex.

  • Thanks. They said the X-ray plus my BP readings were enough to rule out a dissection. Is that not true?

    I have been dx with esophageal spasms before - maybe 12 years ago. They started again just before the holidays. It's one of the reasons for all of the dietary changes I've recently made. I've never had one that intense but it was similar. I'm sure you know what I mean when I say I'm sick of always dxing myself. My health is always off and no one ever knows why.

    I have scheduled my stress test for early next week.

    It was such a circus getting the order. I wish I had stayed at the ER and just had them run every test under the book and gotten it over with.

    I will bring up getting an echo then. I was so exhausted all day yesterday. Thanks for the responses, I was feeling really down.

  • I get that sort of pain from rib subluxations. It's scary for sure and the heart tests come back fine. If nothing else, you could consider that. Sometimes I feel like I'm dying!!! I'm sorry you have to go through this. Hugs!

Beyond irritated so go in for my annual echocardiogram and cardiology... — Butterflies - Lupus Survival Forum

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  • It is really hard to say about your son's defect and rhythm issues. Cardiac defects are most common birth defects and electrical issues go hand in hand with congenital heart disease. I have AIs along with CHD, so don't know what caused what, etc. Don't beat yourself up. He seems to be doing very well. As a mom, you have gotten him medical attention and know signs to watch for in him. It isn't anyone's fault; health issues are beyond our control. Placing blame or feeling guilty doesn't help anyone or really explain out of our control situations. Sorry about the hubby. Sounds like you need to give him a swift kick in the rear. Bet you are nervous about your surgery; you don't need that from him right now :(

  • Praying forbyou. That this gets fixed anf thungs get better

  • My poor Stacey, Sending you lots of love <3 <3 <3 <3 <3

Hey fellow sarkies since my drs are ignoring my symptoms or any changes in my... — Sarcoidosis Online Sites FORUM

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  • 24 hour urine test is to test the Adrenal Glands to see if the Predni-Crap has caused them to quit making the normal steroid for your body. If that is the case, you are stuck taking low dose Predni-Crap for life. (Addison Disease)

  • Wayne, you are truly a GREAT help! I am amazed at your knowledge....maybe I should get my Dr to contact you! Thank you for sharing

  • LJ, Experience is a good teacher. BAD EXPERIENCE IS A BETTER TEACHER!!!! Been there and done that many times for the adrenal test because of being on 80 mg of Predni-Crap a day for several months.

Something horrible has happened to me Before starting lyme treatment I was... — Christian Lyme Disease Support

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  • R u on homeopathic care

  • I'm not under any dr. care right now,Kory Ambriz James.How can I find homeopathic care?

  • I see you are in Ohio. I would ask in all your groups if someone else is, and see if your state has a lyme org.

Wish I could take a better picture but my daughter developed this rash about... — Mothering Juvenile Arthritis

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  • Hopefully it's not ringworm. That's really scary Chrissie Howard. Everytime I call the dr to tell them about a rash, they tell me to watch it. That's why I thought I'd come here and ask. Is ringworm painful? The shape of it made me think of ringworm but the cream really is making it better.

  • Looks like my (non JA) son's excema. We use Curel Itch defense lotion. Good luck :)

  • No, I can't remember for sure but it might have itched. It was a few years ago. If it hasn't reacted to the cream, I'm sure it's not ringworm!

Hi everybody Is anyone from this group living in Anchorage Alaska by any... — Sarcoidosis Online Sites FORUM

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  • Julie I found that for me personally the cold isn't too bad if it is dry. But the same is true with the heat. Humidity bothers me the most, which is why I moved to the desert. The problem I had with the cold was how it effects my arthritis.

  • Ugh. Anchorage has wet, snowy winters as opposed to the dry snow in Fairbanks. :-/

Well hubby fell down this morning about 5 30 AM in the bathroom I jumped out... — Cryoglobulinemia Vasculitis Organization (CVO)

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  • He's been like this since June 1, 2012 and started treatment for the HEP C 3 1/2 months ago....got 2 1/2 to go.

  • The Cryop came with the Hep C.

  • Xxxxxxx Yzzzzzz the virus is what set off the cryo. I'm doing research on the effects of the treatment. If you would like to share where he goes for treatment Private Message me Well Wishes!

ANCA vasculitis I apologize if this is visual TMI but has anyone else gotten... — Vasculitis Foundation Discussion Forum

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  • Ouch, good luck with your surgery. My feet were bad but not like this. they were very swollen,, couldn't see toes, bones or ankles. I could not stand on them. very painful. but when swelling went down, they returned to normal, but I do suffer from Neuropathy ,, feet, hands, legs, and arms. much discomfort.

  • Ann, I was thinking more people would have this problem. Maybe there is some RA component to it - so much overlap in autoimmune.

  • (unknown-WG?) This does look very much like RA. I have a similar appearance to the joint in the base of my thumb on my right hand...I don't have to wear shoes on my hand though. Ouch! I am dx with RA, but serum negative. Hope the surgery gives you relief! :~)

I have excruciating pain like I am in labor but I m NOT pregnant It starting... — Butterflies - Lupus Survival Forum

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  • Ha! I don't know if I could give up my soda. :) Someone also told me Vit D is a factor if you take more than the recommended 400 ius a day. I take 5400!! If I dont take it though my levels drop so low and I can't move.

  • I have ovarian cysts and occasionally the pain is so bad that if I still had my appendix I would be sure I had appendicitis. Luckily, it seems to be cyclical and now that I know what it is and I'm not dying, I can handle it better. I've never had a kidney stone but I understand they are extremely painful! I hope that you don't have to go through a lot of pain to pass it.

  • i have that problem but then i had ones that couldnt come out on there own oh my that hurt . My ra dr gave me some meds to pass them and they have ! Good luck with it hun

Got the worst costo I ve probably ever had right now and I ve had it for about... — Costochondritis is a pain in the chest... literally

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  • Also, you could always go to your GP as well, to update them on what's going on with you. Wouldn't hurt to get a second opinon on how to treat it. :)

  • Any suggestions on home care until I can contact them? Thanks.

  • Rest! Meaning, actually lying down in bed on your back. For me sometimes I can't lay on my sides or stomach. Take a hot bath, but not to hot, use a heat pad if you have one. Maybe some ice and if you don't have ice, use a frozen bag of veggies or something. Make sure your wrap it up with a cloth or something and leave it there for 15 or 20 min. Don't want to cool down your heart. At least that's what I read. Oh and continue to take your Ibuprofen.

wg So I had my Saline Sonohysterography this week and it went really well my... — Vasculitis, Pregnancy and Motherhood

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  • Hi Danielle Doyle! Now that you are pregnant, how's your bp? Are you still on Labetalol or something different? My hubby and I are ready to try so I'm taking it now instead of my other bp med but I'm having some trouble getting it regulated. I'm just curious how you're doing now. :-)

  • Yes, I am on Labetalol, I am only on 100mg, I was on 200mg, mine was hard to regulate to for a while, but as soon as I got pregnant, my bp went down and so the doctor wanted it to be between 120 and 130 for the top number. He said babies like it a little higher. I was down to like 112-118 so he halfed my dose and it is still really a good bp. Very low 120's. Good luck trying!! I hope your bp gets regulated and goes down when you get preggo!!

  • Yes i have high blood pressure prior, and was changed to nifedipine to assist with control of bp as i couldn't tolerate the beta blocking medicines, they made my scalp tingle too much, and as it turns out it is okay for me to stay on the nifedipine

So my joints were popping before my infusion I had it last week but the joint... — Rheumatoid Arthritis, Ankylosing Spondylitis, Lupus, and autoimmune disease

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  • I haven't had a joint infusion, but I do have a muscle and tissue disease.. & when i pop my knee, it aches too. I wonder why.

  • Not sure :( I have RA and Spondylitis, so I figure everything is from being inflamed etc....but this is pretty bad and nothing fixes it. Sorry you deal with that :(

  • I was diagnosed with lupus, then undiagnosed.. Super weird! ... But I believe its from the flare ups, and having swollen joints.

I saw my new Rheum. today. I love her. She was actually taught by my last rheum — Butterflies - Lupus Survival Forum

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  • Keep that doc as long as you can! Rheumy's are VERY hard to find anymore, because it's not a specialty that many medical students are choosing

  • I know it's hard to find a good rheumy! It's been 2 years since my last one retired and it took me that long to find a replacement!

  • It's very hard the first two I saw blew me off like it was all in my head like I was crazy

Has anyone taken factive for Bart or anything else I seem to be a pain of a... — Christian Lyme Disease Support

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  • Thanks Brandy. I'm def gonna look into it.

  • Brandy, would you PM your LLMD? My sister lives in Cary and I have been trying to help her find a good LLMD to get tested for Lyme. I would really appreciate it!!!!!

  • Colonics are great for detoxing and have definitely helped me tolerate aggressive treatment. Add probiotics to them.

Feeling like a 4 year old version of myself today tantrums irritable anxious... — Adult PANDAS PANS Lyme Tick-Borne Diseases

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  • Yep! Herniated disk in neck. Had an epidural steroid injection in it and it is doing better. I may have to have a second one in another week or two. I've had headaches since but no migraine since (knock on wood!)

  • I had some steroid injections in my lumbar spine, a year ago. I have been a lot better, after two of them. I guess we're lucky, not to have gotten the steroids tainted with meningitis!

  • I had prolotherapy shots in my neck and shoulder for several months after a car accident. They worked much better than all the muscle relaxants and NSAIDs which we trouble my asthma.

I dont post often I do keep tabs on everyone in here though especially the ones... — Butterflies - Lupus Survival Forum

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  • Couple of new names here, greetings Cheryl Jaffrey and Denise Contreras welcome to the group!

  • Thanks Been here about a month or so forget exactly when I joined. Nice to meet you Cathy Addair <3

  • Nice to meet u too, Denise! <3

Just getting back from my pcp appointment. received some revealing info — Vasculitis Social Forum

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  • Pred head!

  • I wish I could email my drs. They wouldn't give me that luxury. A have a little head shaking Mark, I wonder if I had the same meningitis as you, as I could maybe even have parkinsons too. I'm not gonna get all worked up about it, now I'm learning to not always believe at first what drs tell you.

  • Michelle, I don't email them directly but through the system the hospital has set up...it works. I do have my senior rhuemy's email address, I can email him directly but I wouldn't do that unless it was very very urgent, I contact my fellow doctor first who works under him. I'm on my third fellow.

Don t know what to do next for my nine year old daughter she has ocd and... — Osteochondritis Dissecans (OCD) Support

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  • I know how tough it is having arthritis but not when I was a child must be really tough...Feel for you allxx

  • prayers for healing...the poor kiddo....

  • So sorry Louise. We go back and forth with a wheelchair here on weaker days. My daughter has ocd of the talus in one ankle and was nonweight bearing 5 months. Sadly her other ankle and foot are not super strong because 4 years ago she was bitten by a poisonous snake in that foot/toe and after surgeries, grafts etc that toe and foot get tired very quickly. Using a chair where possible just helps her get some well-needed rest. Praying things will get better for you all.

Hello question especially for those who developed HSP in adult hood My GP has... — Henoch Schonlein Purpura support forum

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  • and my eyesight is not so good either

  • Jennifer, are you on prednisone?

  • No I was never medicated in the end! Still hoping that the results were just a blip.... Will have to wait and find out! I also have kidney disease now at stage two.

I m currently working with a naturopathic physician which was a good move for... — Lyme Disease Survival Wellness Forum

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  • oh Laurie that's horrible, my heart goes out to you really, I've been in treatment for over a year now not long compared to you and others but I've been sick for 8 yrs. i just got progressively worseover the years . I've been on iv's oral nonstop continuously. It literally feels like the meds just stir up the bateria in your body and it's hard to detox when your bedridden most of the time. I recently started with a new doc a few months ago, and I added iv glutithiane which also doesn't seem to be doing much. I was also drinking green smoothies but not lately because I'm so sick I can barely eat or drink right now. I know a lot of my problem is with detox, but also I think I'm much worse now because my bart and babesia were not addressed since the beginning. I have all my lyme symtpms but the bart and babesia are the worse right now.

  • thanks for the link, im taking a look at this

  • Hi Laurie Ander Gassman, I have a story that sounds similar to yours.

    I've found that if I stay on top of whatever detox methods work for me, I feel better in general.

    I've come a very long way from where I was, and at the same time, no where close to where I'd like to be.

    This Lyme adventure is slow and steady. Sometimes one step forward, two steps back. We'll all get well, I keep that as my highest intention for everyone with Lyme.

Not arthritis related but need to vent My boyfriend and father of my youngest... — Mothering Juvenile Arthritis

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  • Hugs Amanda. Sorry that you are going through this. You don't need anyone else to add to what your already going through. Your better off without but hard to do.

  • You don't need the added stress of someone that would say that to you!! Those little ones need you....belive me, I know the feeling. I hope you are able to get the help you need. HUGS :)

  • He's a coward and couldn't handle it. He was just blaming you to make himself feel better. You're better off without him. I know it's hard right now, but you'll find a way. Defintely, apply for SSI--and then keep applying if you're rejected the 1st, 2nd, 3rd time... Good luck!

I have something called a Enlarged Epitrochlear Lymph Node on both my elbows — Christian Lyme Disease Support

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  • No doctor I have seen seems to know what to do about . I looked on the pc and they suggest a lazer treatment but I can not find a doc that does it.?? I am using Itires Homeopathic by Pekana for lymphatic drainage.. I know I have bart along with other co's but bart seems to be the problem I am having a difficult time treating.

  • Can I ask where abouts r they on ur elbows ?? On the outside or in the inside x

  • the inside, if you turn your arm with inside facing up it is on the side closest to you chest.