Going through of these lost loved ones is heart wrenching I hope all those who... — Ehlers Danlos Syndrome Memorials

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  • Please consider adding a memorial for your father to this page. We would love for him to be remembered and honored.

  • Ann, I think I have a pic of your dad and you in the "photos" section of this group. BTW - You are 100% right - we ARE family. <3

  • You sure do Debbie. Just read the comments on it and it feared me up. It'll be 19 years this year and I can't believe I still have this empty feeling inside.

My daughter hurt her wrist at school on wed and then she fell and landed on it... — parents of children with hypermobility syndrome

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  • Ibuprofen works better than paracetemol. You can also double up if she is in that much pain,so you can give ibuprofen and paracetemol 2-3 hrs later. My sister is a physio and her advice was move,with my sprain I wanted to avoid it due to pain but soon realised the more I kept it still the stiffer it became so caused more harm than good. Straping is a good idea and you can get wrist straping(sports type) from most pharmacies/supermarkets. Definatley get her to move it though it will only get worse if she doesnt.

  • Thanks I have strapped it up but she can still move it a bit. Hopefully it will feel better soon

  • That's what our physio said too Justine. We saw him twice the first week then once a week for next three weeks. It steadily improved with this. He taped it, did some ultrasound therapy and massage. Also recommended swimming to get her using it again. Hope it's on the mend soon but I strongly advise actually taking her to a physio still.

Hi. what is vasculitis. My doc thinks j might have it. I have had 2 CAT scans — Vasculitis Foundation Discussion Forum

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  • An exerpt from the link above: The diagnosis of vasculitis is based on a combination of symptoms, laboratory tests and biopsies of affected tissues. Most laboratory tests used to evaluate patients with vasculitis are non-specific. For example, the sedimentation rate may be high when the disease is active. One laboratory test is called antineutrophil cytoplasmic antibody, or ANCA, which can be present in some forms of vasculitis. Magnetic resonance imaging (MRI), computerized and dye studies of blood vessels called angiograms are among radiology tests used for evaluating patients with vasculitis. The specific tests used in diagnosis and in assessing the treatment of vasculitis depend on the type of vasculitis and the blood vessels and organs involved.

  • Wow ...u all r great! Thanks

I haven t been around too much in the last few days I actually started taking... — Maryland Lyme Disease Support Forum

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  • Yeah I have been trying doxy, clindamycin and amox for a couple years already and not as much help as this seems to be, so far

  • Oh wow. ...my kid didn't go that long without seeing improvement. She had relapses, but building up to remissions, she saw improvement. If she didn't have improvement after a few weeks, doctor would change meds. That's how she ended up on bactrim after the first relapse. Doctor never let her go "years" on meds without improvement.....? You didn't get any improvements on the abx?

  • I wanted to know where you went, glad you came back was worried, I can't always keep up with posts but i try :)

Please excuse as I just need to unload with no one who really lives it... — Vasculitis Social Forum

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  • Rocco Fasciani I also wanted to mention that when they were trying to figure out the Weg hitting the brain they did a spinal tap and there was ANCA in the spinal fluid so it is very possible that you have the fatigue from it hitting your nervous system as well or it had hit if your disease is in remission. It takes a long time to rebuild if not major damaged the nerves. I still have pains and weakness in my writs and even my legs from it. What did help is Physical Therapy to help build up the muscles again from being fatigued for so long. My legs would barely move but after many PT sessions and a good therapist I was finally able to walk into town and back with some pain but not like before where I would walk only about a few steps and would be in so much pain I could not continue. I also was walking slower then the old women. It was humiliating that was for sure. But now I am doing a lot better not like I used to be but much much better.

  • I AM walking slower than the old women, if I'm not riding downhill with my "cityspark" http://www.esla.fi/eng/cityspark.html - WG caused me neuropathy so I probably had ANCAs in my spinal fluid too...

  • Like only cause you can relate not because I like

3 — Ehlers Danlos Syndrome Memorials

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  • I only wish that was all of them, but sadly it's not. I agree with you that they all need to be remembered. Many of them I knew personally and have so many memories...it is always bitter-sweet. I try to remember only the happiness, laughter and the special times we shared. As difficult as it has been to lose all of them I feel so blessed that they came into my life. Each of them remains with me always. Thanks Deb, love you too!!!

I m curious to those who have chiari malformations what led up to you being... — Ehlers-Danlos Uncensored

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  • you might have both. I did. I was lucky that I didn't need to have a fusion for the OA/AAI- prolotherapy tightened it up and made the pain much better.

  • Hmm, a round of (thoracic) prolotherapy actually brought onmy last exacerbation - once theneatgun-to-shrinkrwap effect hadreachedallthewayup to theocciput a few dayspost, igot all the badneuro symptoms again from an earlier highway accident (shapr axial loadingof brain and spine, wheel well cracking jolt downward....), and thensome - worst headaches, period, no medication works, plus apnea etcetera - gso glad i didnot start with upper cervical prolo as originally suggested by my PT! i would havenever imagined it could make Chiari worse (did not even know i had it until this made it obvious). Now i worry when I see prolotherapy touted atthe conference - also heard from a fellow EDSer that it can fail because we don'tstrengthen our ligaments as adequately as the non-EDS prolotherapy recipients... So how does one find out whether prolo will help or hurt? ironically we may betheonly population that actually can have an adverse outcome at all...?

  • Pardon my typing, arthritis flare, thumbs the worst, space bar issues a bit blatant at the moment...

I know that mouth ulcers are a common side effect of Lupus but are other ulcers — Butterflies - Lupus Survival Forum

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  • It might not be related to the lupus, it could just be bad luck. I know there's a few things that can cause it but as they've all been ruled out as my results are coming back negative, I just wondered whether anybody else had experienced it. I'll ask the doctor on Monday whether it could have anything to do with my lupus.

  • My dr says that plaquenil may cause little sands on eyes so i have to check them every 6 months to prevent severe damage!

  • I have got them three times

Hi everyone and to all our new members Ines had a check up in Malaga the other... — Mothering Juvenile Arthritis

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  • How wonderful for you and your daughter! :) Enjoy this time!

  • Hi Jane Jane Adams, we are staying in Spain for now. I need permission from my ex to move and he wont give it. If I want custody of Ines I have to accept. Maybe one day...

  • That is always a difficult situation to be in. I hope it all works out for you Laura Campbell

Anyone else here Chiari diagnosed and take Diamox I m on day 4 of a high ICP... — Ehlers-Danlos Uncensored

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  • Wow, Alyssa, glad it wasn't worse! freaky stuff indeed - i was super lucky myself - could have easily lost control, gone over, and it would have been game over, cspine too unstable to withstand real impact. We've got some guardian angels with acrobatic skills, me thinks...

    They used to say, don't ride faster than your guardian angel can fly! :-D

    Maybe that saying should be updated to reflect the warps in pavement (at least the crazy tectonic stuff here in CA...) as the overriding hazard... I couldn't have been more speed limit, the roads are freaky in places! Glad we're both safe, outside the jammed up brain part - EDS makes for a heck of a risk profile with accidents :-/

    sure is interesting to see such similar experiences! i am still working on my EDS dx doc to realize the Craniocervical and Chiari portions - not hing but blank looks.

  • My accident happened in CA too, up on the 101 between Arcata and Trinidad.

  • Oh yea, i got deer whistles on account of that area up there... Can see the issue. beautiful part of the state! No more distance travel for me though. Plenty of opportunity to jamm stuff up in the Bay Area, anyways! You actually need an all terrain mobility scooter for the state the sidewalks are in in my neighborhood!

    Have you tried journaling to look for patterns re triggers on the pressure headaches?

    By the looks of what I have read just since yesterday on here, I imagine we'll find a fair amount of similarities across with that, too - working on the very question myself so curious to compare notes.

My daughter was diagnosed with Rheumatoid Arthritis when she was 16yrs — Vasculitis Foundation Discussion Forum

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  • Autoimmune diseases can cluster in families. It is not surprising that you both have one. And with vasculitis, one of our symptoms is often the aches you feel.

  • Thanks Leslie any other insight is most welcome, it like everyday something new shows up.

  • My dad has RA and my aunt on my mom's side has RA as well. My grandmother on my mom's side also had a lot of sores on her body so I'm assuming she had an autoimmune disease as well. And here I am with WG. So we all know autoimmune diseases are hereditary but I tend to think they can manifest into other auto immune diseases down the line.

Well in dealing with all the weather changes and pain i decided that i was... — Reflex Sympathetic Dystrophy- Need a friend who has R.S.D

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  • Let me know if it works Anne

  • It worked - I liked it - I crochet but it is painful to do now...I love making picture blankets

  • Thats good and i understand this disease causes us to not be able to do a lot of the things we once loved doing and no one understands that unless they have it also

I was just diagnosed with Type 2 diabetes last week I went to urgent care for... — Sarcoidosis Online Sites FORUM

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  • Glucerna is great stuff, but it has high levels of Vitamin D. If your Sarcoidosis causes excess Vitamin D, I would advise against Glucerna.

  • Type 1 Diabetes is the pancreas not able to produce insulin...Type 2 Diabetes are the cells not responding properly to insulin and/or not enough insulin being produced by the pancreas...Always keep your carbs between 45 to 60 grams per meal..and 15 grams for a snack...always make sure you have a protein with your carb...the carb is the "gas pedal" that make your numbers go up and the protein is the "brake pedal" to control the peaks and lows. Glucerna shakes and bars are a great way for a quick fix if you are serious about your numbers and don't feel like cooking..But, there are generic brands (equate at Walmart) that is cheaper and if you read the labels (make sure it is the shakes for diabetics) you are getting the same nutrienrts...Also, to save even more money, because these bars are expensive, sign up with "Glucerna" and you will receive coupons and gift cheques to purchase their product. I am not advocating to purchase any of these products...just what works for my Husband and myself. We are also taking a nutrition course to help us with our numbers and learn more about our food choices. Good luck out there. I know how hard this is because I am a "foodie" and I am not as "on board" as I should be. I have the tools to do this right, but they sometimes just sit on the shelf..lol..Have a great day all!!

  • Thanks Linda for the info. I also am a foodie, so this is particularly hard for me. Thank God I tend to lean toward savory instead of sweet! I also have the problem of weight loss. I'm 5'5 and weight only 109 lbs. I would like to gain about 15 lbs, but how do you gain weight on a low fat, low sugar, low carb diet! I've lost 4 lbs this week just by giving up sugary drinks, also I don't have any appetite since taking the metformin. Seems like a vicious cycle

For those of you out here with Fibro and was given Gabapentin. Neurontin — Butterflies - Lupus Survival Forum

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  • For what it's worth Lyrica gave me swelling in legs. I've been on Gabapentin for about 10 years all is well...:) it helps with neuropathy

  • I'm on lyrics and it works wonders for me but my Dr also put me on cymbulta also

  • Thank you everyone!

Does anyone take arcoxia I was diagnosed with inflammation of the sacroiliac... — Ankylosing Spondylitis- support

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  • Your going to be ok Jessica! We are survivors! Sometimes a second opinion by another Dr. can be an option in order to figure out what options you have and what medications work best for you. Whatever you do...Stay positive and don't lose hope! Trust me...You can get through this! Are you taking any pain meds or anything?

  • Jessica I have A.S & I've never heard of arcoxia before for A.S. But then again I'm not a doctor lol.. Good luck to you!!!!

  • I'm 43 now and had my first bad flare at 23 years old. I know that It sucks to be young and in pain. I wasn't diagnosed until 33 years of age. Getting a diagnosis can be frightening, but remember everyone's disease progresses differently. Try to deal with your symptoms one day at a time. I have noticed that my suffering is cyclic and sometimes I will be better and other times I will be worse. I looked up Arcoxia and it is a NSAID like ibuprofen. Be careful to take it with food and tell your doctor if you have stomach upset or diarrhea. NSAIDS are a common first line medication.

I wanted to make a new thread for this so someone can learn from it I went to... — Maryland Lyme Disease Support Forum

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A few months ago my family and I relocated to the opposite side of the state... — Ankylosing Spondylitis- support

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  • Arthritis CAN be caused by inflammation and inflammation can be caused by arthritis in its many forms. Which came first 'the chicken or the egg?' All I know is inflammation is very, very dangerous and damaging and to address the inflammation is, hopefully, to mitigate the resulting damage or slow it down. So far, there is no cure for ANY of the arthritises.

  • I've recently gotten my old images from various Drs. They all say something different. Also I have a cyst between my aorta and spine found on an MRI done in April so I had a CT prior to an apt with a thoacic surgeon from Johns Hopkins. The cyst is clearly there on the image of the CT but the radiologist did not mention it at all in the report. My point is radiologist read these and our Drs go by what they say most times without even looking at them. Clearly there are good ones and bad ones just like the Drs!

  • I would find a new Rheumatologist, again. Unfortunately, we have to fight for ourselves when it comes to medical treatment. Don't give up!

Jane just wondering in your naturopathic studies if you were taught what tests... — Natural Ways for RA, Lyme other chronic diseases

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  • Keep in mind that there is a chance yeast will not show up in the stool. I sent mine off about 2 weeks ago and haven't gotten results yet. We'll see if it shows up. My test cost $195. Yeast and fungus are smart little buggers and hide from us. Why it's sometimes difficult to test for and treat. I don't think I ever fully eliminated it the first time, just reduced. But thinking back, not reduced enough. As for what triggered it again, both stress and food. Emotional stress and physical stress led me to not sticking with the diet. I believe it is a lifestyle diet. Not all the supplements, but the diet, yes. Once under control a cheat here and there will probably be no big deal, but if we go back to eating contaminated foods i do believe it can rear it's ugly head again. It's to easy to fall back into old patterns. Oh, that didn't make me feel bad so I can do it again, and again. You may want to put the oregano aside for now and add another from the list along with the grapefruit seed extract. And definitely look into the Candex. Yeast and fungus have cell walls that enable them to hide from our immune system and the antifungals. I've also been researching a product called Triphala. It's suppose to be really good at removing toxins from our tissues. I really want to get this under control, even better than before. So I have been planning out a "plan of action" the past few weeks. I'm thinking of going in stages starting with killing the fungus, then detox the gut, then heal the gut. Not sure if I'm patient enough for that.

  • Triphala is an amazing supplement. Triphala is helps balance the body, is know as the "manager of the house". It helps detoxify and keep things in check. I hoping to pick some up next week.

  • Thanks Jamie. I agree the diet is a life style one. I hadn't reverted to old ways, had the occasional wine, & probably too much fruit, but if like you say I hadn't fully removed the yeast in the first place, a 3 week serving of it probably made it go crazy again. I am taking doTERRA Digestzen which has several different anti parasitic oils in, and I just ordered some more chloroxygen & the candex. Will go for bloods & stool test this week & Jane in our group has kindly offered to work with me as her final assignment for her naturopathic studies, so will have more specific tests done than at gp for this I guess. I am tired of second guessing everything, I have to say & trying to figure it all out on my own...!

So today I am feeling a bit sad. I have decided to go back on Prednisone — Natural Ways for RA, Lyme other chronic diseases

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  • I am wondering if the colonic irrigation had some effect, in that the balance of flora in your system is now off.

  • That would make a TON of sense Tina Nachimovsky

  • Wow you are taking heaps of supplements Bonnie. I vary what I take, and all the ones I had taken previously with success aren't really doing so much now. I take probiotics & have been doing so for 2 -3 years on & off, but the last few months continuously. I have been taking prescript assist which has 29 different strains, but before that I took Metagenics Ultra pro bioplex capsules, which also contain Colostrum. I got on best with that one, so have just ordered it in through health shop. The colonic actually eliminate 85% of my pain within less than an hour, so to me, it speaks volumes about what is happening in my digestive tract. Retaining waste matter will seep through the digestive wall, assuming there is leaking gut, then that will also create inflammation. Once the colon was empty, there was no waste to cause pain. Once I started eating, the pain was back the next morning. It doesn't seem to make much difference how healthy I am eating, the pain has continued. I am fine with my daughter being away, I am happy that she is getting to have a great experience & know that she is being well cared for by my sister & hubby! I left home myself at 16 so don't have any problems around this. I do wonder if I may have created the whole yeast scenario in my body, knowing that the sauerkraut was a problem food & then turned it into something more through my thoughts. In which case why did I turn thisinto something bigger? Getting a full on screening of bloods & stools etc is probably a good idea rather than keep taking supplements which may or may not be helping me, but the cost of this would be pretty expensive, plus all the supplements you are then prescribed am probably looking at in excess of $1000, more than I have right now!

hi there new to group and excited to know I now have somewhere if I say RSD I... — Reflex Sympathetic Dystrophy- Need a friend who has R.S.D

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  • One other thing I am on is SAM-E, 800 mg a day. It does seem to help a little bit. It is supposed to help with inflammaton and is believed to fight depression as well. My pain doctor said it is a good overall natural treatment to try. It is a bit pricey, but I feel that it's worth it. Has anyone else tried it?

  • welcome Heather, rsd is tough I have full body and I have had to come to terms that my drawings suffer, I often am past overwhelmed, I have 3 daughters one 20 lives near me two still at home age 17 and 15, I would give up if not for them

  • ty robin and yes it is my kids 23, 18 & 16 that keep me planted

Well I haven t posted in what seems forever We have been floating pretty well... — Mothering Juvenile Arthritis

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  • Alot of flares are associated with infections. It is very common. Hope he starts feeling better soon!

  • So, will he just get worse with his pain/swelling? He is still able to be a crazy active boy. He just stops sometimes and grabs whatever hurts. Then will favor it for a bit.

  • If he is coming down with something they may give him some antibiotics. Then he will generally get better. My daughter (7) has always been active even in her largest flares. Her meds typically keep her flare free, but on occasion especially with (ie) a sinus infection she will sometimes flare.

This is the high filutin brace I am sporting since surgery The blue under it... — Chondromalacia Patella (Patellofemoral Syndrome) Finding A Cure

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  • Hu Susan .,,, i wish i could remember ...too long ago ... All i remember for sure is it took a good year + ...to feel decent ... For the longest time i thought i had wasted my time on a bogus procedure -- then things turned around ..long time to get to that point though ...pain meds ..all those hap'nin' things ...i just can't remember ...... i probably turned to wine etc ))) ...dooooo hang in ROCKn1 .... k ... weeeeez all here for each other ::: family ...

  • Keep following the doctor's orders and one day, when you go to sleep, you'll say to yourself, "Hey! I didn't have any pain today! I felt pretty good! This surgery was totally worth it!" And when you say those words, please let the rest of us know :)

  • I do know this .... once I got the SCREWS REMOVED (darn things about drove me to the nuthouse!!!!!) ;;;; life seemed to get much better immediately ... Cannot remember how long after the surgery before I had those rascals were shown the exit door :) ; but it was a quick nothing procedure I remember ....

My Daughter with LCV was running fever last night and pain in legs and feet — Vasculitis Foundation Discussion Forum

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  • Yes she is on azathioprine . I'll call him Monday

  • Sometimes they'll temporarily stop the Imuran in order to allow her to fight off the infection and I hope your pcp did some urine and bloodwork, knowing she's on Imuran and has vasculitis. The rheum will probably know the most appropriate action to take, as has been our experience. Strep can be serious in a vasculitis patient on immunosuppressives or with active disease, especially a young one like your daughter.

  • He knew she was on imuran, but no blood or urine test done. What should I b looking for, since strep is serious in vasculitis patients?