I have just read your post and

I felt I should post again, because I don't [2008-08-23]
give anyone the wrong impression in case anyone is following, who may be experiencing the same thing or thinking of starting on these dang narcotic meds for pain. I feel awful this weekend. Thank goodness I'm off for 2 days. It never impacts my work. I mean, its not that bad, but it is a constant sick feeling as if one got kicked in the stomach, or had a car accident - that sort of blunt force trauma feel. I am having lots of headaches now as well. I guess I was just at a good point earlier. Now I am at half my original dose. I wish it could be a bit slower, but I am trying to do this on my own. You are so right, I should go to my PCP about it, but in my experience, the other doctors really treat you like garbage once they know you go to a pain management specialist. There is sadly a lot of stigma placed on chronic pain patients, which is why I feel so badly for others in this situation. I have done a lot of research and see now that this was the best choice for me to make. I may need surgery someday, who knows, and I never knew that one can actually completely be immune to even the most potent IV pain meds if you have been on oral narcotics for years, even at a low dose. I never knew that - this pain clinic doesn't ever talk about anything, just pushes the scrips at us. What a horror that would be if I needed surgery and could not get pain relief after surgery. I'm brave, but not that brave. I have a potential gallbladder thing coming up, as was as GYN procedures that may be in the future, and again, I had no idea. So, I'm here, just not feeling all that perky this weekend. But that's OK, as I figure I'll have lots more weekends to feel great. Again, I am just posting more to let others know that this was not that easy a thing, rather than just wanting to whine at you all again. Peace!

Please see post. [2008-08-11]
I This is a very complicated disease, and as I said, my first symptoms were with my pancreas, though since then, I I certainly wish him luck with his transplant. At 31, he's very young and has a lot of living to do! Just as you pointed out, any time I even begin to think why me, I'm stopped in my tracks before I even finish the thought because I think of people like your friend and particularly all the babies and young children who have either died of this disease or are now living their lives while fighting for every breath. As far as beating the odds, you I was born with this disease but didn I am getting sicker and unfortunately may wind up in the hospital before this week ends, but if I die tomorrow, I will have had the opportunity to have lived my life. The main purpose of my post was to let everyone know that this isn Although your friend spent a long time being misdiagnosed by the experts, I truly believe there are many others out there who have this disease and don I just want everyone to know that it can be diagnosed at any age, and as you so eloquently pointed out, the experts often miss this diagnosis, so patients should be proactive, and if they develop chronic pulmonary or GI problems out of nowhere that are deemed idiopathic, they should keep the possibility CF in the backs of their minds, just in case. Thank you for your post, and right back atcha!!!

I have just read your post and [2008-03-19]
I recently heard something about saline infusions (think I am right about this) being helpful in the treatment of cystic fibrosis. Please do research on this (I would think you would) because as you and I both know, seems like the medical profession really lacks now days in terms of competency. I told 1 physician I went to about a diagnosis and he had the nerve to roll his eyes up towards the ceiling. I told him I did not make the diagnosis, another physician did and I was just relaying. Name it what you want but just wanted some relief from my symptoms. I hope you will keep in touch with this posting and let us know how things go with you. Please do research though because you sure cannot put any confidence in many people.

Hope you read my above posts - diagnosis [2007-04-09]
is only by the pressure points. I, before told what it was, wondered why were my shoulders so tender with my touching them. One day my hubby hugged me and put his hand in the small of my back and it was like sticking a knife there. He never for 1 minute did not believe me when I told him about the diagnosis. I was told by my physician not a test for this, only the pressure points. My hubby, by the way, never questions me about medical issues. He goes on the internet and is always trying to get something for me he thinks might help.

Fibro/CFS sufferers feel free to post here for discussion [2007-03-19]
I have fibromyalgia and chronic fatigue. It I am not one to take too much medication. I do take klonopin for sleep, but otherwise I take sublingual B complex, Ester C 1500, and Global DNA Barley formula. Every so often, I also take a potassium supplement.

Tarlov cyst [2008-09-13]
Thanks for your reply. Gosh that sounds horrible. I really feel for you. I went to see the neurosurgeon and he said if he excises it it will just grow back. It is 1.7 x 1 cm. Also I could be completely disabled from surgery as the cyst lies in the CSF fluid and a nerve. I am just going to have to get better pain relief. Cannot sit in the tub at all. I am hoping it will shrink. I read an article that says I need to stay alkaline so I am trying to follow a acid-free diet.

Sounds perfect! Thanks so much! [2008-08-12]
I started something similar today, but I like your I know its just day 1 but I Then the minute I But when I lay flat in bed, forget about it. Its not my baseline pain, its withdrawal, the squirrely electric-like sensations, stomach cramping, chills, Hey wait! Maybe its menopause and a hot flash, too! Wouldn It was so neat, but I had no idea what it was. Thought it was a stick paper dispenser or something, and nearly razored my finger tip off when I said, ooh, what Sending a hidden razor blade in an unidentified thingamajiggie to a blonde is NOT a good idea! LOL. Thanks again! I'll keep you posted, if you would like.

All the tame, but only when you go to bed? [2008-08-12]
I am running search mode in my brain, trying to remember something similar. I used to do all transcription for a brilliant allergist/immunologist out of the Northeast. He was top of his game. I know this is probably been done, but have you ruled out the invisible bed bugs and mites? I know, but its a huge problem and most often invisible til its a disaster. I am allergic to the world, but don I won That I believe points to liver issues, but its being caused by meds. I am allergic to ibuprofen, but that allergy took a long time building to full anaphylaxis, with just these itching episodes at night. And I had not taken the Motrin before bed, rather hours earlier. It had no correlation with dose, just going to sleep. Are you on any meds at all? Generic versus name brands? I can only take name brand meds, as generics use completely different fillers, and some drugs can be 90% filler to make the actual pill. My doctor and I had to work for years to find out which fillers I cannot tolerate, and its basically any, and I know to stay away from generics, particularly a brand Watson. The fillers can cause intense itching allergies, while if you look the drug up on a site, itching will never be listed as a side effect, but it is the side effect from the filler allergy. Hope this makes sense and might help. There is also some other syndrome that exhibits itself with itching during sleep, and I cannot remember it now for the life of me. If I think of it, I Of course, if you itch all the time, I But again, when one is alllergic to the world since childhood, one gets good at identifying those pesky triggers. Good luck to you!

Thank you so much. I will check it out! [2008-08-11]
Right - there is substance abuse, but, as I

Thanks so much for sharing. I'm sorry you had to [2008-08-11]
go thru it, too, with antidepressants. Thank God I said no to them, or I Some sites say they are a miracle, and I could use Suboxone for a week or two and go thru a completely painless withdrawal, and other sites say that Suboxone is more addictive than the Vicodin, and then you have to withdraw from that! I know when I quit smoking about 15 years ago, I think, I started using the nicotine patch. I felt horrible, so sick, and then read that the patch just had this go on and on and on. I pulled the patch off and quit cold turkey, and only suffered terribly for a few days. I don Thanks so much. Tomorrow is my big day, by the way. The start of the end of a bad thing and beginning of good things! Now off to find some info.

Please see post. [2008-08-11]
I This is a very complicated disease, and as I said, my first symptoms were with my pancreas, though since then, I I certainly wish him luck with his transplant. At 31, he's very young and has a lot of living to do! Just as you pointed out, any time I even begin to think why me, I'm stopped in my tracks before I even finish the thought because I think of people like your friend and particularly all the babies and young children who have either died of this disease or are now living their lives while fighting for every breath. As far as beating the odds, you I was born with this disease but didn I am getting sicker and unfortunately may wind up in the hospital before this week ends, but if I die tomorrow, I will have had the opportunity to have lived my life. The main purpose of my post was to let everyone know that this isn Although your friend spent a long time being misdiagnosed by the experts, I truly believe there are many others out there who have this disease and don I just want everyone to know that it can be diagnosed at any age, and as you so eloquently pointed out, the experts often miss this diagnosis, so patients should be proactive, and if they develop chronic pulmonary or GI problems out of nowhere that are deemed idiopathic, they should keep the possibility CF in the backs of their minds, just in case. Thank you for your post, and right back atcha!!!

First off, Hello everyone.........sm [2008-07-23]
this is my first time on this board. I am 43 yrs old, suffer from fibromyalgia. I have had this pain for about 1-1/2 yrs but got officially diagnosed in September of 2007. I have been on narcotics, tried different types of meds like Lyrica (BAD side effects) Prozac, wellbutrin, neurontin (made me swell), Lortab, Xanax, Flexeril. Well, the Lortab and Flexeril helped at first, but Lortab does nothing for me, so my doc put me on Percocet 10 mg and I am still on Xanax. I was also started on Cymbalta (2nd day).....She told me to take it at bedtime, but I am WIDE AWAKE but she says this will wear off after a while. I had to quit a good paying job with health benefits because the stress of that job was making me have a nervous breakdown, I was hurting 3 x more than the normal pain and the company, well that is another story for another time. I have gone thru testing for lupus, MS, RA, etc.....I just got another job as an employee but still wondering IF I should take the insurance, which I probably will not as it is WAY too expensive. I am not even sure I will last at this job as an employee because shift work just does not work for me anymore. I am so tired of always being in pain, having to pop pills and feel like a druggie and I am so afraid I will get hooked. Well, I know this is long and if you read up to this point, thank you...I have started the application process for disability because this disorder has me in the poor house as I am unable to keep a job because of this. I know they may not approve me, OR if they do, it may take years.... Anyone with FBM, what do you do, what meds are you on, how do you cope without feeling like you just want to cry and scream and control the mood swings? I also take magnesium, fish oil, B vitamins.... I push myself just to sit at this computer to start working. The company I was hired with, they let me tell them what hours I preferred and of course, I chose hours to start later in the mornings (mid mornings). Upon awakening, it takes me a good 3 hours just to get myself together, I do my stretches, I take my meds, take a bath/shower, get dressed, fix hair, and put my makeup on. I try to do everything before all of this happened so that I can at least feel like my old normal self....but is is so hard. Please excuse the typos, I am now just getting groggy and will take advantage of that and hit the sack.

Crissy, I just posted about FBM..sm [2008-07-23]
I also forgot in my original post, i have been on Omega fatty acids for a long time, but it does not seem to be helping me. My doctor and the rheumatologist I saw, well, he told me that my doctor was doign a great job of treating me and there was really nothing he would do differently. My medication regimen for this awful thing: Cymbalta 60 mg once a day Percocet 10/650 mg 1 twice daily. Xanax 1 mg 3 times a day Lortab and Ultram for breakthru pain. I take other vitamins and I also take magnesium. As you can see, I am a walking dealer for a drug addict and i HATE IT....but I hate the pain more. Stretching exercises seem to help a GREAT deal and I do them a few times during the day. I also have a myspace page and I have met WONDERFUL people who suffer from FBM, joined support groups online as there aren Everyday, we send each others messages, we chat on IM, some of use even exchanged phone numbers. These gals are wonderful and some have other conditions in addition to FBM and they are the strongest women I know. If you would like to find out more about the groups I belong to, please feel free to email me. Good luck with everything. I know what you are going through.

Thank you. Please see message. [2008-05-19]
Thanks very much for your post and your prayers. My main intent in posting was to inform people that this disease can be diagnosed in adults, even after having a relatively healthy childhood and adulthood. In all the medical notes I've ever done, I have never seen a newly-diagnosed case of CF in an adult. My second intent, admittedly, was that I was/am very angry about the way this DNA testing was conducted, and I wanted to warn others out there that this could happen to them, as well, and if they're uninsured when the testing is done, they're not going to be able to get health insurance if the test is positive. I did contact several attorneys over this matter. They were either uninterested in my case or were already being treated by one of the physicians in this large monopoly of specialists that spans several states. I also contacted HIPAA, but they didn't feel this fell under their purview. The last thing I did was to contact the State Board of Medical Examiners (with a copy to the State Medical Society). I received a reply from them just a few days ago wherein they informed me that they had opened a file and are planning to investigate the case. About a month ago, I applied for Social Security Disability benefits (as well as SSI benefits, since my income is now so low). I hear that 75% to 80% of these cases are denied on first try, so I'm not holding my breath (no pun intended). The SSI program is a needs-based program. It's basically welfare, and I almost requested they not file that application because I felt so ashamed. I had never been on welfare in my entire life. However, I DO need the medical insurance desperately, and even if I were approved for and began receiving Social Security disability benefits TODAY, I wouldn't be eligible for Medicare for roughly 2-1/2 YEARS, whereas medical assistance is immediate with SSI. I'm still working as much as I can (which isn't much). I'm hoping my employer doesn't fire me because my job is the only source of pride I have remaining in my life these days. As far as your adult-diagnosed ADD, I'm very sorry to hear that. Are you taking medication, and if so, is it helping at all?? I hope you can get treatment and that the treatment helps. For a while, I thought I might have the same thing, but then I realized all the drugs I'm taking would be enough to cloud up the brain of a genius, so I'm pretty sure that's not what is causing my inability to concentrate, etc. In your case, it seems that youAHA moment, where you can look back at your life and realize that this is a disease you've probably had all along, but, as you said, medical technology is advancing, and we're learning new things every day. Certainly, nobody knew of or much about ADHD when you were a child. I never had an AHA! moment with this. About a dozen years ago, I had my gallbladder removed because of stones. I had a hysterectomy due to a prolapsed uterus in 2001. Inormal folks. In fact, before I became ill in 2006, it was probably close to a DECADE since I even had a normal cold! In July of 2007, I apparently had pneumonia during one of my hospitalizations, but I didnproblem or even feeling as if I had a cold. The first really bad cold I felt was during my hospitalization in August of 2007, and, ironically, that was my best oxygen hospitalization out of all of them; I needed very little, if all, oxygen during my hospital stay. The cold, however, was the worst I had had in my entire life. I even complained to the nurse about it (which I never ordinarily would have done with a normal cold). That was the same hospitalization when the DNA test was taken. I was fortunate enough to visit National Jewish Medical Center (about 80 miles from my home). My doctor is the director of the Adult Cystic Fibrosis Program there. He said I have TWO disease-causing mutations. He told me that my pain will eventually stop once my pancreas totally destroyed and replaced with scar tissue. (I've read that people with chronic pancreas have an increased chance of developing pancreatic or other digestive cancers, and my mother died from colon cancer.) He said, instead, lung disease is probably what will kill me. X-rays showed bronchiectasis (which they said is secondary to cystic fibrosis), and my PFTs were abnormal, but my pulmonary problems aren't the main thing with me right now. In fact, although I'm noticing an increase in sputum production lately and the tendency to become short-winded more, this part of the disease seems to be something that is coming on so slowly that I barely realize it, for which I'm very thankful. I think, other than my loss of pride as a human being, the main thing that saddens me is all the children and babies that have died from this disease, and I feel very guilty if I sound like I'm complaining. I'm NOT complaining (except for the way the doctors acted), because I feel so fortunate to have been on this planet for all these years that if I die today, I will have at least had an opportunity to live my life that so many babies and children weren't fortunate enough to have. As I first wrote, though, please keep my experience in mind, in case someone you know and love suddenly develops digestive problems that canidiopathic and become chronic, and tell them to be certain to have insurance before agreeing to or requesting a DNA test. If they have cystic fibrosis, the CF Foundation offers to assist in the payment of premiums if someone caninsurance wouldn't pay. Again, thank you for your prayer, and I will send out one to the Big Guy for you, as well. I truly hope you can find a medication that will help with your ADD. (By the way, I donjust ADD; it's a disease that can really mess up your life!)

Not interested or understanding [2008-05-19]
I don't have MS, but I certainly can relate to being left and with no one being interested in learning about the disease process. In 2001, I had a hysterectomy, cystocele and rectocele repair and bladder suspension, and my boyfriend of six years decided that three days before my surgery would be a good time to leave. I think it was the emotional loss (as well as the monetary loss since he contributed to the bills) that hurt the most. Fortunately for me, I had two great friends and an aunt who had keys to my house and would stop over all the time to see if I was okay. (I felt okay, but stupid little things, like removing an ice cube tray from the freezer, were difficult in the beginning.) So I can relate to being abandoned and the hurt it can create on so many different levels. I I live with my daughter now, 2,500 miles from my home, where I was born and raised. (Ironically, she takes Provigil herself!) Now that I She has called me lazy during some of her angrier moments, which hurts more than I can express in words and just adds to my own sense of worthlessness. She Every now and then, I do mention something in the form of a what my body joke (for example, when goofy or weird things happen with my body, I look to see if these are components of CF, and nine times out of ten, they are.) It however, I Maybe holding someone you love at arm's length and acting aloof is their way of preventing the emotional pain they might feel if they truly accepted the fact that you have a serious disease. (Or, as in the case of my boyfriend, they're just plain creeps!) My daughter and I did have a discussion regarding my death just last week. (At this point, IMe, since I think it Many posters on this board are married and not alone, but for those who are alone with no life insurance, please read my P.S. post above.) I personally am grateful for boards like this because sometimes, it's the only outlet we have to just vent or to ask questions. I know there are CF and Pancreatitis boards on the internet. I've learned quite a few things from reading posts on these boards, and I've found that finding a community of people with the same disease is very helpful because they DO understand the disease process and what you're going through. I wish good luck and the very best of health to both of you. I will keep you in my prayers.

I don't have MS, but I wanted. . sm [2008-04-23]
to say how sorry I am for what you must be going through! I don't have MS, but I have chronic fatigue and/or FM. I have been taking Provigil, and it has changed my life. It gives me the energy I need just to get through the day. It is very expensive though. This year our insurance will cover half of it (Thank goodness!). I don't know of any chair that helps with nerve or muscle pain. I just make sure that my work area is set up so that I don't have to do long reaching (i.e. for heavy books)and I take breaks when I can and stretch. I have my monitor set up on about 4 books so that it is right in front of my face so that I don't have to bend my neck at all to look at the monitor. Have you ever read the Spoons Theory? If you haven't read it, it is very interesting! I don't know how to make a link, but if you just Google it, it is easy to find. Good luck to you and your kids!

Thank you for [2008-04-19]
this valuable information. I sympathize with you, and I am outraged with you at the way this testing was done without any regard for what we know to be the standard procedures. If you can find the energy, I hope you will file a complaint with the medical board for that state, and also see if you can get any free legal advice. If this was, by chance, a HIPAA violation you might be entitled to $250,000. I just don't know if those laws would apply to your case or not. I have also just been diagnosed with something normally diagnosed in childhood, but mine is just ADD. I'm in my mid 40s, so even though I knew I was having major problems when I was little, nobody knew about these things in those days, and there was no help. I just thought I had depression and anxiety. I am very sorry to hear your story. It is not right. I hope you can get some justice at least. I will pray for you. Your post has given many people a lot of important information.

Thank you, Janie. [2008-03-20]
Wow! I couldnprofessionals, at least the ones that seem to hold a monopoly on their respective practices in my town. I sure hope you have a different doctor now!! I will definitely investigate saline infusions! Thanks for the tip. As I I can also give credit where it's due, and after yesterday, believe me, it's DUE! I had an appointment with National Jewish Medical Center in Denver yesterday. This appointment lasted six hours, but I didn The entire experience moved like a well-oiled machine. They made my local hospital look like a butcher shop. As noted, I HAVE done a lot of research into this (especially pancreatitis), but it In my case, my lung disease is mild. It The doctor yesterday told me that eventually (probably in a few years) my pancreas pain will go away because my pancreas is basically cannibalizing itself. Once it finishes destroying itself, although Idead pancreas, I won I probably will develop diabetes, though. Unless I develop pancreatic cancer (or cancer somewhere else in my GI tract), though, he told me that my lung disease will definitely be the cause of my death. They gave me so much stuff yesterday, including a very nice book (hard-bound, no less), Now That I Have CF. The entire book is devoted to adult-diagnosed cystic fibrosis. National Jewish is THE place to go for this disease. This is their expertise. I had previously felt as if Iwolves and had lost all trust and respect for the medical professionals as a whole. My experience yesterday has restored my faith. They gave me prescriptions for a box (5) of Fentanyl patches, more Vicodin for the pain that isnhospital worthy, more Xanax for the incredible anxiety I have (I awake in the middle of the night, panick stricken, almost every night.) They re-began me on paroxetine at double the dose I had previously been on, feeling it might work better for me. They gave me an Acapella device to use daily that helps to get rid of the mucus. (I was surprised to find that the use of this device, as they directed, is exhausting! Now I understand why patients with cystic fibrosis are so tired as a result of the treatment they need to undergo.) They gave me an entire box of Creon sample bottles (pancreatic enzyme). They gave me samples of Qvar, Pulmicort, and two ProAir HFAs. They advised me to apply for Social Security disability, and I met with the social worker for a very long time. She also wants me to have my CICP (Colorado Indigent Care Program) case re-rated because she feels I'm paying too much now that my income has decreased so much. The only snag is that if I need to be admitted, they admit through a university hospital near them, again almost 80 miles from where I live. As it was, we had to rent a car yesterday to get there, so I don That A few weeks ago when i had a hospital-worthy attack, the two patches previously given to me by the hospital (which I saved) helped very much to get me through the attack. Only drawback is they take a while to get into your system, but once they do, they last for three days. So maybe these new patches will help prevent another hospital admission, as the others did. Iofficially in the CF register, and I've very eagerly agreed to participate in any research projects where they may need my help. I don

Thank you. [2008-03-17]
I Do you mind sharing how old she was and if she suffered from this all her life or was diagnosed as an adult? As far as how I was treated, it I wonder, if that test had been negative, if I would have ever notified that my DNA had been collected in the first place. Now I I even wonder if this is done routinely to patients who are uninsured and considered indigent. All I know is that this is becoming an increasingly difficult disease to manage, and even before the DNA testing was performed, I knew I was getting sicker and sicker. I In fact, I have printed out the form but haven't filled it out yet. I'll wait and see what happens at my appointment with the CF Clinic on Wednesday before deciding whether or not to do it. I again thank you very much for your post and hope everyone who reads this will know that adult-diagnosed cystic fibrosis can happen and is happening, from what I I never knew that, and although I obviously have my issues with how this was handled, this is my way, I guess, of shouting it from the rooftop so that others might be informed because I don As they say, knowledge is power.

Adult-diagnosed cystic fibrosis [2008-03-16]
Hello, everyone. I For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult. I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a stomach bug, but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathingand I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came. I was immediately diagnosed with pancreatitis. The only risk factor profile I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital. My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since. Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis. Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn For whatever reason, they finally began to explore the real reason for what they finally conceded was my chronic pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis. Without any prior opportunity to ask questions, without any informed consent and without the words cystic fibrosis ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6. I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my employer-provided health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldndiscriminate. (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.) However, I The root cause may be cystic fibrosis. If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once youofficially diagnosed, you can I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away). From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having. I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this mystery pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt fine and chalked it up to being in bed in the hospital for 11 days. I challenged the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas. I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease. If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more insurance friendly state or find another means of securing insurance). However, I wasn As I said, I never heard the words cystic fibrosis uttered in my presence. (I found the testing laboratoryInformed Consent for DNA Testing form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the informed consent with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.) I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease. I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition. Please deposit this information into your memory bank in case it may someday apply to you or someone you love. CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN (In fact, the original name for cystic fibrosis was cystic fibrosis of the pancreas.)

rhizotomy [2008-02-23]
They said they weren't sure if they could go that high on me i.e. C1-2 but I thought they could. Another pain clinic does. Will have to check through my neurosurgeon as I have hardware and wonder if that heat will affect it. Am wondering about a C2 facet joint injection. I have read that sometimes helps too. Gosh I am about ready to give up and very sensitive to the darn steroids. My skin starts bleeding if I get too many shots.

Fibromyalgia folks also and Mary, got the email about injection [2008-02-14]
I went back to pain clinic the first of this week- the other thoracic lasted for, ahh, 4 days- and the PA said well we should repeat and I said no, have turned down all hard medications before and now I said want Lortab for really bad pain - they monitor and I only take 1/2 tablet if needed. Now having said this, let me tell you what I found out about a health food store item called Ribose- I started taking nearly 2 weeks ago now and so far so good- read an article saying how much it had helped person's fibro- I gave it a chance. I will continue to stay on it as long as out of that excruciating pain.

Body Balance [2008-01-29]
Here is their web site to read more about their products. Email me if you would like. http://www.pillfreevitamins.com/bodybalance.htm

neurosurgeon visit [2008-01-17]
Well, once again thisneurosurgeon saidmy MRI looks fine andI am not a surgical candidate. He is sending me to a new pain clinic. I have never had a cervical ESI so am very nervous. They will inject my previous scar at C5-6 or lower. OUCH. I am also seeing the neurologist Monday. I want an MRA of my neck vessels and an MRI of my brain. I feel like the nerves in my neck are torn or something. Just horrible pain. They all love Lyrica, but no thanks. I read it decreases the platelet count, not good.It costs a lot too, $50 copay and affects everyone differently. I am very sensitive to meds-wish I weren't. I would love to get rid of this 24/7 headache though, cannot take it much longer.

Maybe research this.. [2008-01-16]
I had muscle issues and read somewhere that after doing activity, you shouldn't immediately apply heat. I was always taking warm showers after activity because it felt good at the time, but read somewhere that you shouldn't do that - it somehow damages the muscle more. I'm not sure if that would apply in cases of fibro, but may be worth asking/researching. (only thought this because you mention the jacuzzi) I think the dance class is an excellent idea. Good luck!!

Adm,,,,Would you delete [2008-01-11]
this repeated post? I received an error about posting with ? in the subject line....soI reposted. oops! Thank you

I think I might have celiac disease. [2007-12-27]
I think I read that the average age for diagnosis of celiac disease is 60! There is a drug, Dapsone, that could cure the skin problems I Plus it wouldnhelp the intestinal problems. Only a gluten-free diet will help, which is extremely inconvenient. Oh, and I can So the only logical thing seems to be trying a gluten-free diet for a few months, when I Grrrr.

Hmm, didn't know you were there. [2007-11-05]
This is how the orthopedic docs are at this office, but my mom has always gone there and isn they made up their minds and were too busy to listen to us. Excuse me if you don't feel this example applies to the original post, but I was trying to show the OP she is not alone is having trouble communicating with MDs. They often have preconceived ideas and certain words tick them off. Mary has been treated poorly time and again, and I was trying to help her get the help she needs. If all the MDs except her rheumatologist don't think her diagnosis exists, then she has sort of hit a stone wall as far as treatment. If they don't agree with the diagnosis, then I'd want to hear what their explanation is for the pain. Just because many docs deny a condition exists doesn't mean they are correct. Do you remember a few years ago when all the MDs were denying that H. pylori caused gastric ulcers? It took years before they would treat that bacteria because they had not been told by the traditional researchers that H. pylori was the cause of many peptic ulcers. Doctors can be very stubborn. I was trying to help Mary. What about you?

Fibromyalgia and Yoga [2007-11-05]
It I just wasn't able to browse the entire board, but of the random posts I read, they were mostly about pills. My rheumatologist had recommended Yoga stretches because I didn't want the pills. Not only does it help with the pain, it helps with the fatigue, big time, and any sleep disturbances. For me, anyway. Also, I can't recommend Yoga unless a doctor tells you it won't hurt you---other conditions can be exacerbated by it. I bought a book on Hatha Yoga andlearned from that.I don not the person's in the book. No forcing yourself into ANYTHING. You may progress as time goes on, but never force yourself. Anyway, was diagnosed 12 years ago, and have had a lot of success with the Yoga. It has to be done regularly, especially when first starting out, so that you become limber. The more limber, the more relaxed. Again, not without a doc's assurance that you're not hurting yourself.

if you Knew How They Were, why did you go there [2007-11-04]
why didn't you follow up on your written description of what happened? You let them think whatever your MA told them was the problem. If you knew how they were, you would not have let that happen. I doubt it caused the M.D. and Nurse To Spin On Their Heels, or that you had to Beg For A Sling or that they Punished for 40 Minutes. If you knew she had bursitis you would have made sure they knew that was not the problem. You were not there to make sure your ma was explaining the problem? This situation does not apply to the OP post.