hilbiligrl

Number 1 goal: is to continue to keep looking at my disease from a positive perspective and a happy one. To be even more thankful and grateful, despite what we fight. This attitude alone has helped tremendous this past year as a goal. Im not perfect, so i have more work to do. Also: I plan to start a hobby, woodworking. I have wanted to do this since i was a kid and now is the time to start. I plan to try to wean off meds after 10 years of suffering. I plan to continue to take control of the things i have control over, even if it's not my body. I can control my thoughts, outlook, attitude, diet, etc. I plan to keep diving deeper in my meditations. I plan to create a better me from inside out I plan to love and support and share it. I plan to find more inner peace ~tennille

i honestly feel much worse when exerting myself.... i feel as if I am going to fall over dead. I still can't seem to add constant excercise.... even the afterwards is much worse too. But something I plan on to continue to work with on a small scale... hoping i can build it up over this year.

My doctor has never forbid me to drive, however..... there are many days that i know i cannot do it, nor can i drive safely, so i will stay home. Many times I can make it 3 miles and have to pull over and lay down in the seat..... i have no energy or strength in the limbs, especially arms and neck. I can't even hold my arms up to drive, and I cannot even hold my neck up either. I always feel like I'm "stuck" in some type of "pre faint mode" but for long periods of time. This disease has affected my driving for about 5-6 years now. It's gotten a bit better though. I very much understand. HUGS. tennille

Yea.... i noticed most stuff I find says it's a 'normal process'.... but even so... would this not be a very important gland? And just theorizing, if it becomes calcified, would it not cause lots of dysfunctions in the body and organ systems? Also, i ran across some research (i'll have to look back at it) about a study on MS patients, that all of them (not sure how many they studied, but hundreds of cases).... all of the MS patients (as in 100% of them) in that study had calcification of the pineal gland, which i also found interesting. I read that the pineal gland is the first organ/gland formed when a baby is forming in the body, also has alot to do with sympathetic processes, etc. I know not much study has been done on the pineal gland. But i have a feeling it plays a vital role and that the calcification of it would have to cause some health issues. Lol.... me and my theories Sometimes i have to 'think aloud'.... to try to make sense to myself..... lol

Thanks sweetie.... I will definitely post anything we can find out. I thought it was really interesting though. ~tennille

Actually, it's not even been discussed with me. I went and got MRIs yesterday dating back to 2006..... and one particular one, while i was under the care of a doctor whom i fired.... she never mentioned it, or discussed it. I have actually sent a message to my doc to pick his brain a bit and see what he might could tell me about that. From what im reading and researching, there is a disease called Pineal Dysfunction.... sounds soooooo much like DYS & POTS and everything we all seem to have in common. Hmmmm....... im def interested in what my doc might have to say.....

I was just wandering if anyone has noticed on any MRIs over the years, if any of your records or images state or if the doc pointed out any calcification of the pineal gland? thanks tennille

I actually do not take anything for the migraines. I have had them since 7th grade, they start with my vision 'being taken away' by at least 75%. (always frightening, but over the years i have managed to let that fear go, which lessens the whole migraine).... somehow my migraines over the past few years have evolved into what i call 'silent migraines'.... as in, i still have the blindness, but the headache, light sensitivity and vomiting, etc dont' seem to happen. I think in the past 5 years, i have had perhaps 2-3 full blown migraines and would go to the ER and ask for a shot of imitrex (which i use to keep at home but when they starting changing, i stopped needed them since i had no more pain really). So.... for that, it just kinda went that way. However, alas, I do still have a daily 24/7 headache, but the tramadol seems to keep that underway until we figure out why i have had this headache for years on end. For the fatigue.... oh my, it seems to me that I would be the world's worst with this. As it is my number one symptom. It literally paralyzes me.... literally. And the ONLY thing, the only thing we have found to work to give me energy is tramadol. That one med, if i take it by 7-8 am... i can actually accomplish some things in a day's time. But, not everday is functional with it..... But it makes a huge, huge difference in the energy/tired/exhaustion area as i have felt sucked dry for many years but i take the tramadol and in a lil bit, i FEEL ENERGY. Some days alot of energy. And for some reason, the tramadol has an overall effect of 'suppressing' the many daily symptoms i have. (and we have tried everything we can think of for energy, yet this one med is the only that helps.... unfortunately, my dosage is a high dose though. Some on here can get by with 50 mg a day. For me, 200-400 a day. Not sure why.) thanks for the uplifting words!!! Yes, I have been on a whole new path. Organic eating and juicing, meditation, and a very bright attitude and outlook. However, i still have my bad days where my attitude isnt' perfect, but hey.... look at what we fight Love and peace tennille

Hello all.... it had been almost a year since I have been on here. I hope some of the ones that know me are still here too as I've had a few to email but I haven't done well on responding to anyone for a long time. I am treated for all thee above in the heading.... also including blinding migraines, gluten intolerance. (just giving new ones an overall of what im being treated for I am on: Klonopin 0.5 mg twice daily still..... we tried to wean off, but found it was detrimental for POTS & DYS and severe anxiety that i didn't realize I had. Tramadol 200 mg daily for energy. Also, the extra that i keep treats my TMJ that seems to be bothersome almost continually due to the elhers danlos. I am also on Cromolyn Sodium 1 vial 4 times a day.... this is for the MCAD and has saved my life, literally, twice. (I owe this live saving to Dr. Diana Driscoll, who called my doctor, Dr. Reid Blackwelder to put me on this..... as when folks have MCAD, we are quiet prone to sepsis attacks and I have had 3 life threatening ones in the past year.... last march, it attacked my jaw, face swelled big and fast, lost most feeling in my chin and jaw, and the infection ate up part of my jaw. There was no cause for the infection, other than the sepsis attacking... ) I am also on Marniol (the THC pill). I juice, organic veggies and fruits with a mastisizing (spelling?) juicer. We have found that this med regime works best for me, but i plan to try to get off all meds in the next year or few, if possible. I still have ups and downs. and this past year has been a battle.... still a battle but much easier battle at times. I am still disabled. However over a year ago, I took the perspective of treating this spiritually, with my doctor as support. I have done daily meditation for well over a year, and it has helped the most. I also, attack fear head on. Fear, is the root...... so that is one of the things i personally work on. Fear can disable you and can have such an influence on this disease(s). (that is just for me... i understand most will not get that statement... but I am going at this with a different perspective.... as i aim to beat this even at a very severe state as i have been in for the past 3 & 1/2 years.... however suffereing over 10-11 years now). My doctor and i have made alot of progress, yet many setbacks, as I am his first patient with these illnesses and we both learn from each other. He is a mind body spirit, integrative doctor. And I did feel the need to mention him here today as he is now the President of the American Acadamy of Family Physicians, he is a rare case doc and he also leads teams of docs, and is professor at our local Quillen College of medicine. Dr. Reid Blackwelder. I have had successful ostepathic treatments for the jaw and other pain ailments, in order to keep from adding more pain med. Id rather stick with tramadol than take lortab, as hydrocodone type meds make me feel worse. I still have so many symptoms that are just too many to mention, however they are suppressing some as I have went along in meditation and alot of peace and silence this past year, as i have had alot of battles to fight. I still have potholes and down times. I still cannot perform in society as society would see fit, but i am making some progress. I have less bedridden days. But i give out in just an hour or two, sometimes i can handle up to 4-5 hours in getting out, making myself move around, doing something.... even if i have to take breaks frequently. going out is still an obstacle, as i can only make it about an hour.... once i get to 2 hours, i feel the symptoms coming on and have to get home quick to lay down. Anyways, most of all, i have a different perspective and outlook on all this. I see it as beauty in the making. I will not let it beat me down to nothing but pity for myself (and that is okay too, i have been there... i NEVER JUDGE.... i know the darkness. I have already lived that far too long. And once i started changing my outlook, things got magically better, even if physical symptoms still persist. I want to give a huge thanks to Dr. Diana Driscoll, who without her, id be.... not alive. She called my doc, and my doc had the ER set up for cromolyn sodium when i underwent a second upper jaw sepesis attack of where we were afriad it would go to the brain, as each attack progresses extremely fast and gets out of hand very fast. I also have to mention my doctor again. Dr. Reid Blackwelder in Kingsport, TN. This man is a rare, very rare gem of a doctor. He is changing the medical field, fervently and as much as he can and as quickly as he can. I wanted to add his picture here due to his recent elected President over the AAFP (national folks, and he has lots of hands on in the decision making of our future healthcare.... and he is spreading the word on our diseases here plus training his doctors/students/residents in the treatment that is working for me. WE ARE BEING HEARD, even if by one doc in my local area, who, however, has a national presence now, plus as i said, he is teaching his students/residents as he is learning from my disease(s) So, a school, with students, being taught about all this and that we exist Here are 2 links of my doc: (to the forum moderator women, Im not sure if this is allowed, but i do not mean it as advertisement.... i just could not find a link online to our recent newspaper article and due to the fact that my doctor is in a way, spreading awareness and making a difference on many aspects. I felt compelled to share him, and that his is an integrative doctor. Perhaps this can help others across america find a better doctor with different appraoches. ) https://www.facebook.com/photo.php?fbid=538022552887657&set=a.298122656877649.71985.218197141536868&type=1&theater link number 2 https://www.facebook.com/photo.php?fbid=538022946220951&set=a.298122656877649.71985.218197141536868&type=1&theater&notif_t=like the links are only for spreading word about Dr. Blackwelder and what he's doing to change the medical field, doctor's treatments toward patients (he is a biggie in this, patient treatment, as in, how doctors attitudes need to change) and more. Despite still fighting what we have.... I am very happy, & loving life, even if i feel crappy daily... even if i cant function mostly.... i really do love life and i plan to live and overcome, in whatever ways that may be I also am homeschooling my 8th grade daughter and 10th grade son now and it has been pretty cool, even if i am sick. It is turning out so well. I love you all..... much peace and progress of health to all aspects, to each of you on here tennille

katybug~ thank you yea.. i had read it many times before... but i still don't understand how it's making me feel 'stronger in the limbs' and that i feel energy (even if it may be mock energy). And it actually suppresses many many symptoms...... but not in a low dose I knew about the drug when it came out and when given pain meds, this is the one i try first since it's non-narcotic and not a controlled substance. I knew this drug had amazing qualities in the psychiatric sense, as in, it's excellent for mood enhancement, in addition to all it offers that i don't understand. I wander if this drug may open up a possible usage for it for chronic fatigue suffers with ME in the future. weird that i hate codeine...... yet this is similar? hmmm..... didn't realize it played a role in serotonin and noreph..... as i can't tolerate, even in the tiniest of doses of any ssri or snri... and can't tolerate tricyclics except doxepin (but only short term on that one)..... hmmmmm....... my thinking cap is on..... but im looking up this octreocide too...... wandering if it helps in chronic fatigue syndrome/ME sufferers.......

Kim~ hi! actually, nothing makes me sleep or knocks me out.... and what is odd, is that i quit taking the phenergan a few mths ago... only will i take it if the nausea is so bad and i need to be somewhere desperate... .otherwise, i found myself shaking (hands, arms, head) more when i took it everyday.... and yes, since it reallly doesnt do much by taking it daily... i just suffer through or take marinol (marijuana pill) which works loads better, but has a couple of side effects that im trying to work with..... thanks so much for your post..... how you tuned into that, knowing phenergan is prob not needed, that was cool and corina~ im right almost where you describe. I've been doing meditation and spiritual journeying.... dream journals, anything to help me spiritually, mentally...... and to help cope.... and i have come far, but still so far to go. I find, im not doing much research anymore, as you said...... i think im at the point where..... my kids are teens.... my brother and his wife are amazing at helping me raise them, keep them in church, take them to school, activities, etc..... so.... i figured, instead of this guilt game with mysef that i cannot be there physically for my kids right now, that since they are teens and are seeking out their ownselves and needing me less, then if i can let go of the guilt and shame, then i can focus on me..... and allow that to be for a while, even if its for a year or more or longer..... my daughter is showing some slight signs, she's 13, and has shown them since she was about 1.... so now, im trying to learn to cope better, quiet my mind, soul seek, etc..... so that i can help either or both of my children should they succumb to this....... so yes, i totally can relate and understand exactly what you are saying...... i its so funny that i dont take notice to some meds on here cuz i dont think they may relate to me..... ive heard about the octreotide on here sooooo much .... and after what, almost 2 years on here, i still hadnt looked it up...... i did about a month ago.... but still im scratching my head as if it would be for me or not..... i know i seem to have a bit of severity difference and myriad of symptoms differences in most..... I need to do a search on here and see if there's been a thread on what folks have used it for and how it helps or doesnt..... we haven't tried a new med in a while cuz the last few we've tried have made me even worse..... oh my But my doc treats me as if he and I are a team.... my psychologist as well, who deals with chronic illness patients and works in my docs office...... so, we have a great team.... in the same office i have my own osteopath too for any pain issues that arise.... so im grateful for it... deeply, deeply grateful... cuz ive been through the 8 years in finding someone to help and feeling alone and then finally finding a rare case doc who wants to learn and who believes us and wants to help..... it's just we've tried everything i know on here to relates to me.... and we've tried many other things too. One thing i will say..... maybe someone can shed light in this area. I find, when im prescribed tramadol, that on the days that i take it in a higher dose (only on the days i take it), i can function for at least 4-6 hours..... days i dont take it... no function at all. It's the only drug that gives me energy and some type of strength in my limbs that i cant explain. But im not too willing to go down this road yet, as even though tramadol is not a controlled substance.... it can be highly addictive and intolerances develop quickly........ i still scratch my head as to why this is the only drug over all these years that can give me function and energy, or at least what i mean, is enough so that i can function for several hours..... yet a true opiate like percocet, lortab, etc... does not have that effect....... sigh...... thank you both for your responses..... corina.... can i ask what the oceotride done for you?

Ok... i've been going on 10 years now. Im 34, this disease has reeked havok in every area of my life. Each year, i have progressed worse, more symptoms, more malfunctions, with increase of being debilitated..... these past 3 years, im still 75-90% bedridden. Im gettin worse, but im coping better.... my doc has been able to find ways to suppress some of the worse suffering, but i still suffer greatly on many many days. Im now only having about 1 decent day a week...... im confined to my bed and house... i push, and make myself do some things daily..... only feeling horrid afterwards, but still pushing. I guess... i don't even know what i want to ask.... just want to know that there are others out there who have suffered for 8-10 years or more and if you find you have no more 'remissions' but only stay in a debilitated state for 75% or more of the time....... I guess i keep waking up thinking i'll be okay, or a remission is in sight.... but it isn't.... only getting worse..... I just am at a crossroads in this as to whether, am i going to be like this forever? No matter what i try doesnt help, doesnt improve the debilitating weakness and the myriad of everything else...... im scratching my head..... are there others out there in my shoes too?

Hi marti Yes, we are pretty sure im a dead ringer for EDS... especially with my latest go around with my TMJ. I have had many mris and such, seen 2 neuros and no one has ever mentioned chiari..... although i am well aware of it. I may see if my doc can pull up some mris and see if they can detect a chiari malformation. But the ME is such an even more right on dead ringer for me. I have every symptom and then some.... very intriguing there. Yea, it was prob your article that you posted.... my doc liked it, and he is quiet interested in it. i need to read up again on chiari..... i have a friend who i talk to everyday on facebook who has it, and one of her children has it and they live very close to me, but i first learned of it on mystery diagnosis and pondered those years ago, if i might have it, due to the eerily similar symptoms.

Glad you posted this. As, this post has helped me to 'think' and summarize the 'evolution' of my disease(s) process. To answer the first set..... i feel i've dealt with what i have all my life.... however each year, getting worse with a few relapses up until my 20s..... Then mono opened the door to a sudden onset of alot of this..... after that, i had relapsed alot, remitted alot.... had long functional times.... then long non functional times...... However i have noticed from mono 10 years ago to today, i have indeed grown much much worse, being at least over 75% bedridden since october 2009. As far as the second set.... i have to go with 1, 2 and 3. With only small progresses here and there, but overall, none to where i can function daily, but again, i will have a good day here and there. BUT, my docs and i myself and really working hard at this, taking many approaches...... as im open to all, no matter how bizzare. Being stuck in a bed, when i should be graduating pharmacy school right now has really got me into the mode 'i've got to conquer this, at least, to some extent, if not fully'....... im determined to fight and figure things out as best as we can. i'll have to stop and read over everyone else's .... very useful info... thanks for the thread RK

I know this thread is comparing similarities..... but thought i would throw out here that i had emailed the link about ME that someone provided on here, to my doc and he is amazed at how 'right on' ALL my symptoms fall underneath..... our next appt is def going to be talking about this in more depth. I think he sees it as we see it here.... that CFS needs to be changed to ME in name..... as it seems to be more 'perfect' in ALL my symptoms plus a more respectable name than chronic fatigue.... cuz chronic fatigue doesn't get it...... he was excited to read it.

Ive had it in my regimen for a good 6-9 mths now i think. I'm not sure what i notice about it.... BUT.... my joints aren't having major issues and I'm really bad about not taking them for a week or so during worse feeling bouts. So, i will say this... for me, i do notice a difference when i don't take it as compared to when i do. Im not sure what difference it is really as im really still trying to fine tune my regimen as we go along and as we figure out more things. I do think, if one does good one it, that is beneficial. I have to take my supplements in sets.... and i do them at least an hour or hour and half apart..... so my morning meds are broken into 3 phases.... conventional meds first.... next hour my vitamins, and a few select supplements.... then after another hour or more i take the remaining supplements..... (i have issues with taking a whole bunch of stuff together)

Has anyone tried it, used it, good, bad? I remembered it from an old book my mother bought when my children where born, that had hollistic, conventional, bach flower remedies, herbal remedies, etc... i remember reading about chorophyll and how it could build up the blood, and many other things. Just wandering if anyone has tried it, thoughts on it?? thanks

Oh my misstraci ~ reading your post just made me melt in sadness. Im so sorry.... im not even sure what to say other than huge hugs to you and you will def be in my thoughts and prayers.... and so will that hubby. Maybe he needs some leisure time here and there??? but then, i understand there are sooooo many issues within a marriage in dealing with how sick we are. Big hugs to you my dear hang in there

Yes there is always hope. I think my significant other (been together 12 years... i've been sick on and off for 10)...... at first, I would have relapses of periods of no function and many symptoms, then long periods of function..... hubbs would throw out nasty remarks that i was lazy and stayed in bed all the time, etc. He wasn't too bad with it, but it was hurtful. He also made me feel low down and good for nothing due to his remarks at first. As he watched me be admitted to the er several times and once he started going to the docs with me, and once they actually (after 9 years) diagnosed me with something..... then he was like...... 'oh... i had no idea'..... and see, he had congestive heart failure, was in intensive care for 2 weeks about 9 years ago..... so, when vanderbilt said that this disease is like living with congestive heart failure every moment.... i think it kicked in for him. He's been very very supportive, but we also work well as a team together too. He takes care of me, pretty much, never makes me feel bad about being sick and bedridden alot (80% of the time really)..... and although he doesn't understand how bad im sick, he tries to remember how he felt when he had congestive heart failure. He's laid off of me with the house, cooking, laundry, etc...... as he knows i just can't do it very often here anymore, and he very very very rarely says anything negative..... although he does get aggravated just as much as i do about this disease and all of my limitations. Hang in there..... if you have or get a diagnosis, it would/could help if the spouse went to some doc appts to hear from the doctors themselves...... i've been there.... i have felt like a huge burden on everybody.... my teenage kids, my parents, my sister and brother and my hubbs.... but i think i've gotten past that, although i still feel that way from time to time.... as it's only natural im sure. hang in there and let's hope he comes around soon for you!! best wishes

my doc wanted me to try gaba about a year ago, but for some reason, i didn't.... not sure why because i tend to have great results with anything that helps with gaba i.e. klonopin.... lunesta, etc I also bought niacin (the flush free) but i only added it to my regimen about a year ago for only a week and then my doc said scratch it, so i did, not sure why though. I haven't gotten into reading this thread but interesting how my doc wanted me to try gaba but not the niacin....... so now, i've got reading to do.... very inetersting

I have to say, i've read every piece of this thread and all the links to the articles and to Yasko's site. Im SO interested in this! Love to learn anything that can be beneficial, even in an odd way. Does it not point bascially to a clean diet? of course the supplements we wouldn't know if we didn't have yasko's testing done, right? very interesting indeed..... and RKT im going to hit that other thread now.... and see what i can dig myself into

Oh sorry... i meant to say, i had many many symptoms..... but i was stopped cold turkey. Def neuro and sooo many more, a deep depression was a symptom as well..... it seemed after i was taken off abruptly, that's when the increased heart rate all the time would start showing up everytime i was seen by a doc.... which was never mentioned before then.... odd....

i would like to think how long you have been on it would post in a factor here. But I am on it currently and have been on it before, for about 9 mths. I was very naive about klonopin and had no idea how difficult it is to wean off of it. Very, very slow weaning is what seems best and from what i had researched alot about it, those who had been on it for years and/or at higher doses, had to wean off of it with valium (diazapam) and tapering down. Unfortunately I was stuck with a bad doc at the time who suddenly stopped it after 9 mths of having 1mg twice daily (which is i think too high for me, i had feelings of being emotionally numb on that dose)...... the withdrawal, i feel took over a year..... i had no chance of weaning and i do not wish such a withdrawal on anyone, although it is very common with many to have some type of withdrawal it think. I would taper slowly, stretching it out, not being in too of a hurry while tapering off, if it were me, but i of course would consult your doc. Doing it slowly and taking your time, im sure you will be just fine I have came to the conclusion that I ultimately do better over all with it, than without it. And im ok with that and can keep it in check by not taking some doses and if i need an extra during highly stressful periods then i might have an extra few for a day or two. Although, if there ever comes a day i decide or my doctor decides that we need to stop taking it then i do believe he knows my fears about the weaning process and im more than certain he would make sure I come down slowly and steadly a safe way, especially with the DYS. It would be a courageous day for me the day i/we decide to take it out of my regimen...... it is helping so much. good luck

issie~ oh wow... i am so very much like you in many ways.... ah... i knew there was more to maca than i thought, but totally couldn't bring myself to remember it, or look it up... lol, im wiped out lately, totally in crashzone 24/7. I knew it had more benefits to it that just some energy. Even though it doesnt make a huge difference, i do notice THE difference there is when taking it with my regimen and when not. (i really.... really.... hate to take pills..... so some days i just don't take them, except for just a few main ones that have more of a bigger difference... it's something im working on.... i dunno, its just when i take them, i just wanna throw them right back up, so i have to fight with that feeling and automatic psychological connection of it) yea, that is a high dose of tramadol, it's not my dosage now, its lower, i think 50 mg twice daily. But I just wasnt feeling any difference.... in anything. But at 100mg twice daily i feel energy and perhaps some strength (not sure why), but it also gives a calming, more positive mood, and am able to function not only physically better but cognitively better for some reason and i am less bumping into the door facings and into the corner tables in the house, etc... ah, it made me less clumsy. And took away my headache without the use of a goody powder. However, it's as if i need higher doses, or stronger meds in that type of med (a true opiate will make me generally feel worse, despite taking away pain... and i already feel horrendous enough)....and the sleeping side of my spectrum, whereas ssris, snris, tricycles have huge and many negative impacts in the tiniest amounts. I also have a higher tolerance for pain that i see in most people around.... im not sure why. oh and the mustard seed.... i had to look it up again.... although i have read through the bible all the way once and read it daily and nightly growing up, i havent read it in a long while so i had to look that one up. If i have this right, jesus actually said mustard seed when grown was the greatest of all herbs. So, im guessing to get the best benefit of it, one would think it would need to be fully grown when ingested? as per adding to our regimen...... and yea, def had to have gotten the olive leaf from you, i cannot remember the thread, yet i know i read it.... i thought it would be a good precaution after finishing those antibiotics recently. Plus i have been taking probiotics that i added when i added olive leaf. I also take tumeric daily too, and the licorice.... licorice for me is a life saver for the stomach. No conventional med out there seems to be so quick and fast acting with stomach issues.... it still amazes me. I keep it on hand.

issie~ i thought about sitting down with my doc and talking about tramadol for off use as energy only..... but im sure he would have a cow knowing the dose that works best for me.... and im really too chicken to even talk to him about it yet...... but i think: well, i could ask about provigil, but then.... which is the better med and has less side effects and is better for long term use and which is also more affordable with greater benefits. Since i haven't tried provigil, id rather stick with tramadol honestly. On the days i take it, i can function a WHOLE lot more than on the days i don't take it. Why it makes such a huge difference, i just don't know. I'd like to achieve that function through natural methods..... but, the tramadol, is just a miracle worker for me...... im soooo glad it's not a controlled substance though.... yet, it is looked at as if it is, which is understandable.