The surgery I had a month ago is still causing pain The doctor said I m going... — Christian Lyme Disease Support

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  • I'm sorry Kim, Isaiah 45: has been a blessing to me

  • I am so sorry that you are hurting so badly. Remember God is carrying you through this time so you are not alone. Sending prayers

  • I'm sorry Kim, I'm right there with you in the pain and discouragement department...all I can say is JESUS is coming....

Does anyone have kids who never stop eating My 2 girls are so thin yet should... — parents of children with hypermobility syndrome

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  • I've cooked pizza, pasta, jacket potato just for one child since she got home from school. She's 7 and eating like a 6ft man!!

  • My daughter is the same she eats like a horse and is always hungry I just thought it was her having hallow legs lol xx

  • My daughter Is 8 but height of 15 year old and always hungry only she doesn't have a high metabolism. We are fighting a constant battle either her weight. She is always hungry and although usually very placid, can become very upset and angry if told she can't have anything to eat. She is aware she is overweight and has good self control in everything but food. Also it's not rubbish she eats, it's always fruit, veg, etc.

Please can someone advise me about a gastro issue — parents of children with hypermobility syndrome

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  • Have been to our GP with my 17 year old every few eeks over the past year- omeprazole helped but didn't stop tummy pains and upset tum- now been diagnosed with IBS and given Meberivine tablets which she takes 20 mins before each meal. This is really helping. A lot of the time last year her symptoms were put down to stress- which is wrong as it is a pysical condition, not psychological. My husband kept telling her it was stress trigerring symptoms but this is unfair as she is doing A levels, drama etc, but a normal tennager would be fine ding those things- her hypermobility conributes to her high anxiety but IBS is a condition in its own right.

  • Keep going back like we did- having tummy spasms causes heartburn when acid splashes upwards...taking antispasmodics may help settle things down more effectively i- but ask your GP.x

  • We are having lots of investigations done at the min and I have put a post on further done the page about HMS/EDS and links to Gastro issues x admin x

Anyone get the sensation that their bottom lowest rib is being pulled slightly... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • For me the physical therapist said a bone at that level is twisted and she is working manually to make it line back up with my spine. I have chiari not officially DX with EDS but very hyper mobile...she said it is important that I use both hands when grabbing anything especially overhead... Even things as light as an almost empty cereal box...for me my daily activities make my bones go the wrong way...good luck...oh and at home I just do a lot of yoga and stretching lol ironically it works for me....up your vit d at night...might help calm your nerves :)

  • Megan O'Hehir you might also need to work on strengthening your obliques I would see a physical therapist...make sure before you go that u will be working with a Dr and that they manually work to help u get in alignment..my PT specializes in Gerontology the study of older adults...important when.dealing with special populations...u also want to provide the PT with your full DX so that they can be informed and provide u with the best treatment

  • I watched Black swan last night andas it was about ballet yes there was some EDS the protagonists lower ribs - whens she stretched back in one scene- moved in very strange manner I thought - weird movie tho!

I ended up being taken to hospital on Friday with what they thought was a PE... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • That is terrible!! Hope you are feeling better soon!

  • Thank God it wasn't a PE. I had one and was hospitalized gor 5 days and it could have killed me. You are blessed. This is a lesson to keep your legs moving and don't lay too long.

  • I only lay when I am asleep, I can't sit down for too long, I can't read or watch TV as I get bored in one place so am always pottering about xx

I had the flu a week or so ago along with the rest of my family It really... — Christian Lyme Disease Support

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  • Same here

  • I'm so sorry you're feeling this way. Every time I get sick it seems to knock me on my butt for way longer than it should! Our family got the flu in December and I diffused thieves and peppermint round the clock. For the first time in forever (I seriously just quoted Frozen lol whoops) my sickies didn't drag out for a month. I hope and pray you find relief soon.

  • both my husband and I literally took small doses of Colloidal Silver all day long for a few days and decreased as we improved and it keeps wanting to come back so we go at it again.

I am concidering moving to CA However I am 20 years old at the moment I live... — Christian Lyme Disease Support

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  • I like the idea of a long term visit, but you know where your heart is. I'm originally from MASSACHUSETTS. My parents brought me to fl when I was 5 the first time and every 3-5 years after. The first time I told them I would move here some day. When I was 25 I felt a strong tug to move, it was after saying for 3 years I was going that I prayed and told God if he wanted me to go I needed they money to go.

    What I'm saying is, do your research. Find an area you like, research jobs, housing, and somewhere to get your Lyme treated should you need it. Then save the money, minimum and simmer for an emergency. Most importantly, pray. If this is what God wants, you'll get there :) good luck!

  • I would pray about it and be certain before making such a leap. I live in CA and agree it's great, but I'd honestly move anywhere to be near family support! Or have them move with you. ;) really though, God already knows what's best, so commit to asking Him in prayer and He will guide your steps.

  • Start building connections.

No one should take the swine flu vaccine it is one of the most dangerous... — Sarcoidosis, CFS, Lyme, MS, Lupus, ALS, Inflammatory Diseases and Bacteria

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  • Ah, Russian Roulette...I honestly don't know on this one. It could be that vaccinations save enormous numbers of lives from acute illnesses but trigger other slower immune disorders for some people. I had all the usual childhood ones and various travel-advised ones. The benefit of my illness is that sick as I am, I catch nothing. Maybe my body stores bugs instead of dealing with them, or maybe the bugs I have prefer a monopoly situation and won't allow any others. I had a curious thing happen years ago where a GP tested me for a few things and the lab report came back saying I wasn't showing immunity to anything eg hepatitis, tetanus etc. That was bizarre because I was still within the coverage timeframe from shots prior to a trip to Egypt. I think my immune system is not under or over-active, just completely motionless!

  • Lol Elaine

  • "The most important concurrence in all studies of the procedure is the clear observation of sarcoid-like responses to tubercle bacilli in some subjects" From: http://www.nature.com/jid/journal/v18/n5/full/jid1 95245a.html

I ve had my green tea instead of 3 shots costa mixed with sweetener 2 pints... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Thank you this is such a journey to healing..I've been so broken and suicidal with pain and not knowing how to stop it. This has given me some hope xx

  • Hope is a lovely four letter word. Without it we would all give up. Hope for better health is why I get up each morning :).

  • Spinach, kale, cucumber and blueberry smoothie :) Yummie

Please could I ask all you mums and dads if your children suffer from being so... — parents of children with hypermobility syndrome

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  • Tropical fish seems to help, gives my daughter some thing to watch with out stimulation. You need to go old school with this if possible, trip to dr and lavender, warm bath, massage, warm milky drink x

  • Yes Pembury in Kent. However the consultant is impossible to get hold of. Our poor gp us constantly seeing us but we don't seem to be getting g anywhere;0 (

  • Your In the right place. We use heat and we also medicate as needed. There is much advice for pain here. I hope you find what works. I had a complete vitamin and mineral test ran. It does get better at times mom...

What s your take on muscle relaxants I never took them until about a month ago... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • meantime very gentle massage is great for relaxing tight muscles

  • Ann I have had so many of the same side effects and was about to write that my dr thinks I'm mad and just not giving the drug enough time to get over the initial side effects. Now he has started using it against me, when I askex to try LDN he said, remember what happened when you took 2mg of Valium, we don't want to risk it with your sensitivity to meds.

  • take him the information about the genetic testing for the drug enzyme dna mutations. It is real that some people can't metabolize SOME drugs properly, but until you know which enzymes you have that aren't working properly (making too much, making not enough, or making none at all) you can't necessarily figure out which drugs will be problematic for you. I am 99% certain I am a low or non CYP2D6 metabolizer, even not having had the genetic testing done, because I fit EXACTLY all the symptoms, every drug I have had either no effect from or only side effects and no benefit is on that list. EVERY one of them. That's good enough for me to look at the list and say, nope , I'm not going to take that because I have VERY good reason to think it will fail. If the doc insists that I'm wrong, then I'll say then run the DNA test so we can find out for sure. I'm OVER being a guinea pig with meds that have proven time and time again to make me MORE sick than before I took them and they give me none of the benefit the doc said they would. No more of this crap that they insist I just give the next one a try when the literature says what will happen to me. DO THE TEST, DOC, AND THEN WE'LL TALK. I know I'm his most dreaded patient these days. Too bad for him! He's already caused me to lose 2 years of my l life because he won't listen and can't be bothered to do any further looking, would rather blame it on it being in my head. I seriously expect that one of these days a doc is going to tell me my problems are due to my uterus traveling around my body. It really feels like their practice of medicine is from hundreds of years ago instead of modern times.

Does anyone else in here get chronic earaches I get these swollen knots under... — Sarcoidosis Online Sites FORUM

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  • Yes I do too. And it stays forever

  • Had to have the one behind my ear lanced because it just kept getting bigger. Was full of nice, beautiful crystals. Biopsy showed they were crystalized granulomas. Would have never gone away.

  • Maybe I should have my ear nose and throat guy check into it tomorrow

Hello all just joined I have primary hypothyroidism now this has been... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Recent studies raised the possibility that, beside gluten, wheat amylase-trypsin inhibitors and low-fermentable, poorly-absorbed, short-chain carbohydrates can contribute to symptoms (at least those related to IBS) experienced by Non Celiac Gluten sensitivity NCGS patients.

    http://www.mdpi.com/2072-6643/5/10/3839

  • Here's a link to a 2015 review of 'Non-celiac Gluten Sensitivity'

    http://www.ncbi.nlm.nih.gov/pubmed/25583468

  • Welcome to Starbutts, enter at the rear.

Hi mummys daddys. I m taking my 14 year old daughter to our gp tonight — parents of children with hypermobility syndrome

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  • The urology team at Alder Hey are amazing they have been fantastic with my daughter, I really can't praise them enough Caroline Saunders who is there is an absolute star. My daughter has to self cathertorize and they have helped us lots. Xx

  • Urology were brilliant with my Dom. They're really knowledgeable and know there stuff. XXX

  • Finally saw a brilliant gp at our practice.

    I took all.info I had printed off and highlighted everything relevant.

    Also supplied a list of symptoms of my daughters and how long each symptom.has effected her!!! Laid it all out and began.... End result.. The gp asked why has all this been engorged as she has q history of hypermobility and is under physio and had insoles for her shoes!! ' he actually remembered admitting her to hospital in 2009 very poorley with mycoplasma, erythema, tummy problems etc and was put on steroids for a week and symptoms are still ongoing and cant believe the rhuematologist hasn't acted on this and hasn't even taken notice when I try to explain!!! So now the gp is pushing on this to get some action from the rhuemy :-)

Good Monday Morning friends looking for some advice please I guess I m like a... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Holy cow!! Dittos Kate Blake! My genetically high cholesterol is in the 300's without statins. I'm taking a turmeric mix called Curamin. It's suggested in other article there could be liver damage from that- it's unknown. Fricking damned if you do, damned if you don't! So confused!

  • Crack on Michael Baugh

  • ~ hi Kate Blake, i see you and Michael have another thread going about your cholesterol numbers which looks it will be fun when you get your tests done........i wasn't able to share this morning this link from Dr. Sinatra who has great info. on statins and cholesterol, so, hopefully i'll be able to paste the you tube video of him sharing, he has a wealth of great info. for statins. here's the link: http://youtu.be/Wgpl0zOg2ZY now, hopefully, you can open the link!!!! i'm still pretty new to this stuff of sharing links and articles.

Wg 2013 Hi everyone I hope all had a wonderful weekend I have a quick... — Vasculitis Foundation Discussion Forum

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  • It could be many different things ...but not that unusual for us Vascies. Be sure to mention to your doc

  • I get red raised patches from my arm pit to my neck and upper chest . I can't touch the skin and there are painful lumps under the skin. Then I usually bust out in body hives... I have been on prednisone for this for 18 mos. weaning off. Trying to catch them again for a biopsy. Hope you get answers.

  • Have this lump since I started on steroids now have come down from 60 to 1 mgs but still have lump .....don't know the answer sorry

I desperately need advice on appealing my 3rd denial for disability Waiting 6... — Social Service Connections for Lyme Disease

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  • Attorney is appealing the case but I've lost faith in the whole system. Watched boyfriend screwed by gov't through hurricane sandy and I'm getting screwed by them with this disease. Ready to move to another country already!

  • Kendra Sue Too... I would try renting my house....but that also means losing. Been there, done that. Houses get trashed and huge loss of money. I put blood, sweat, and tears into this only 5 yrs ago. Besides, can't move out until boyfriends house is ready. Rebuilding that from Hurricane Sandy 2 1/2 yrs later......

  • I'm at Appeals Council.. waiting on answer. First cardio conveniently left out my echo results from info submitted to gearing judge. And in AL... no reconsideration. So I'm waiting.

This is a very controversial subject but I must discuss it Many fellow Zebras... — Ehlers-Danlos Support Forum of North Florida

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  • I lost a FB friend to suicide last year. She had the same neck/headache issues that I have. She was always so supportive of others but never asked for help. I do hope there is help, support and resources for those that need it, but I know that's not true for everyone. My mom had EDS but was never diagnosed and in her time, pain meds and PT, two important staples to our care were not readily available. She tried suicide twice. I don't like the idea of assisted suicide, personally, but knowing what I know about untreated pain, I can certainly understand the despair. Don't ever give up hope and reaching out for help, the world needs each of us.

  • I think this up coming generations outcome will be interesting.. For the first time many with EDS 3 at least are getting diagnosed younger, and are no longer pawned off with your too young to have your knees, shoulders, back hurt. They are getting therapies, and help earlier and more proficiently than ever before. Hopefully we can help them before they are torn apart with pain to those extremes Lisa!

  • While I am certainly glad that a lot of people do not suffer severely from this syndrome (it is not a disease), there are numerous that suffer intolerable pain from several aspects. I was walking one day and haven't been able to walk the same since. All of my joints are painful, knees and ankles more than others. My bowels no longer work. I can only eat on certain days. I have tremendous migraines. I could go on and on. How is my quality of life? It sucks! All my friends could not handle that I can't run around and play anymore. I can't play with my grandchildren. Don't have much to talk about because I don't do anything except go to the doctor. Something new comes up wrong every month. Chronic severe fatigue is killing me! Can't clean my house. Depressed? You bet your sweet ass I am! My life totally changed over one night. The cascade hit and it hasn't stopped yet. But I am dealing with it without pain meds because they didn't work. Would I be interested in assisted suicide? Most definitely. And who gets to decide MY quality of life? ME! I worked as a RN until disabled and I watched families abandon their loved ones - never visiting or calling to check on them. But don't pull the plug or think about putting them in a long term care center because they would lose their inheritance or social security check!

Hi Butterflies — Butterflies - Lupus Survival Forum

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  • I would go to a Dr and not mess around. The flu is really bad this year! better to get a professional opinion.

  • I did get my flu shot, a month or so ago. Plus, influenza is respiratory, and this isn't. And getting in to see a doctor is going to require my husband taking a day off work, or else riding the Access van, which is how I plan to get to my Rheumy on Thursday. Which is a pain and usually takes a lot of extra time. It's exhausting even at the best of times. But I will try to call a doctor today. Either my primary care, or the next Gastro Doc at the same clinic as my Rheumy. And see what they have to say.

  • if your temp goes up again, go to the ER. stomach flu can get bad.

Ok weird symptom alert I woke up the morning and between my pointer finger... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • so that probly is right then

  • that will be $250 please pay at reception PMSL

  • That did come to mind. I was hoping someone else would pick up on it and you did. So thank you