Mary, never knew that about Cipro. I took it for UTI and WOW, I had

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.

Mary, had my steroid injection yesterday [2008-01-29]
and today I am feeling like a new person- gosh if only the feeling continues- I was in such bad pain yesterday morning. I had the injection,came home and laid up for the entire day, only bathroom and to eat dinner later on. The solution given this time was twice what I got before (as per the physician giving) and I am just keeping the ole fingers crossed. Once again, no pain at all, finished prior to my thinking he was done, no kind of pain and if relief, then I would gladly accept some in order to have this pain go away. Good luck!

Listen to this one about Cipro [2008-01-07]
I took Cipro off and on many years ago due to urinary tract infections and had no problem with it. The last time, and I do mean the last time, I took it was approximately 14 years ago. I believe it was the second day of dosing that I became extremely paranoid. I went to a local grocery store to buy groceries. I felt as if everyone was staring at me and talking about me. I paid for my groceries and the cashier gave me mychange, which I did not realize (for some odd reason). Now, I am not a confrontational person at all. I began arguing with the cashier that she did not give me my change back, all the while holding the money in my hand. I caused such a scene. I knew the manager as he went to our church. He came over and asked me what was wrong. I told him the cashier had not given me my change and that she was arguing with me that she had. He reached over and took the change out of my hand and gave it to me. Needless to say, I did not go to that grocery store for a while, as I was so embarrassed. I went home and called the emergency room as I had a feeling it was the Cipro, whatelse could it have been. The nurse told me paranoia can be a side effect. It is now on my chartthat I am allergic to Cipro.It was just horrible.

I have fibro, had to take Cipro [2008-01-07]
here lately for urinary tract infection and my fibro was under some control, then terrible flare again. I now am thinking after reading this owed to Cipro. I definitely will be more aware in the future about any medicines such as this.

Cipro and fibro [2008-01-07]
I notified my local fibromyalgia coalition here and they are writing an article about what these drugs do, i.e. causing and worsening fibro. Anyone affected by these drugs needs to notify the FDA. I did and they sent me a letter saying they would investigate it. Some people have sued for the side effects of Levaquin. I will never take any fluoros again. My friend was completely shut down from a month of these drugs with no reversal.

Mary, never knew that about Cipro. I took it for UTI and WOW, I had [2008-01-06]
point of unbearable. My doc said he had never heard of such a thing and I told him that I had fibromyalgia and he said that it must be a flare up due to the UTI. Bulloney! I now see an MD who is ALSO an NMD, so I have the best of both worlds and my insurance covers my visits and meds. As well, he sees his patients at the hospital if they have to be admitted.

Cipro [2008-01-06]
Hi, Here is that website on victim stories from fluoroquinolones. Unbelievable but true. http://fqframes.org/fqframes/index.htm

Mary about those headaches, Botox shots work wonders [2007-11-19]
Have you tried those yet?

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.

Mary, how are you coming along with those headaches? sm [2007-10-18]
Am concerned, know how they feel. Post and let us know how you are doing.

Mary, let us know if anything helps. I [2007-10-16]
have that head thing, where it feels like everything is swollen pushing from inside out? I can hardly function. I never heard anyone else describe it so close to what I feel. I only take Ibuprofen because I am afraid of drugs and side effects. Have you had it a long time or is it new?

Cipro-low thyroid [2007-06-03]
Gee, I wish I could sue the makers of these poisons. Now I have low thyroid which of course makes my muscles hurt worse. My skull is so tight I am about ready to pass out. Do your wrists and ankles hurt from your fibro? I am taking fish oil and guess I will try the nortriptyline. Need another MRI of my neck. I heard to avoid potatoes and night shade veges too. Gosh too much to do! I am going to order Super Green Foods to help and also change my vitamins. Was drinking a soy protein and that is making it worse. Am switching to GNC liquid vitamins and they also have liquid calcium and magnesium. Just shoot me!

Cipro now pins and needles [2007-06-02]
Now I have developed a neuropathy. Does fibro ever feel like pins and needles? I have very tight muscles too.

Cipro and muscle pain [2007-05-18]
Here are some victim stories. These drugs make fibro worse. http://fqframes.org/fqframes/stories/area.htm

Cipro [2007-04-22]
I didn't take the Diflucan as it mixes with valium that I take for anxiety and muscle spasm but the doctor says it is okay. I took some coconut oil as it kills yeast. I am eating yogurt. I am eating some sugar but not as much as usual. I need to gain weight. The cipro made my body hurt a lot worse and I pray it gets better.

I don't feel well after Cipro either. [2007-04-21]
I don't have fibro, although I did have a few years in my 20s when I had a lot of pain (but not as many areas as would be called fibro). But I know Cipro is one that makes me feel like I have a UTI, which is weird, and I always have to take Diflucan afterward to clear up yeast. Can you take that? Usually they just have you take it a day or two. If you have liver problems it might not be a good thing for you. You can go to a healthfood store and get probiotic pills to try to restore your normal flora. Most of these need refrigeration. If you could possibly get your calories without sugar or simple carbs, it would help your fibro because sugar promotes inflammation. Hope you feel better soon.

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!

Hi.... [2008-08-16]
Bless your heart. I want to meet others with this disease but at the same time I hate to think about another human being suffering in pain like this. I never knew people could hurt this much from a disease. The flares are like a toothache in your joints, red, hot swollen joints. I get the fevers and chills with it too. It has never been in remission. No, the Humira didn't work for me. Enbrel did but everything is short-lived with me. The MTX kept sending my liver enzymes up to high until finally they stopped trying to give it to me. I got worse on the Remicade. The Orencia worked for about 6 months, long enough for me to go back to work inhouse and now I am out on medical leave. I have been in transcription for a little more than 6 years but with this condition it is off and on work. I have been hospitalized 6 times this year. I have had fluid removed from my lungs twice, so now when I swell, they keep me and give me IV Lasix, my electrolytes are usually out of balance, so they fix that too. I go home feeling better but 3 weeks later it is the same old song and dance. I have an appt. Tuesday. They are talking about starting Rituxan but worried about my kidneys. We will see. Since the Humira worked for you, are you able to type okay? Can you do a full-time position? You can also e-mail me at the yahoo address if I am asking questions that are too personal. Nice to meet you. Take care.

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!)

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. [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.)

? Thoracic Outlet Syndrome, ? Neurontin [2008-01-11]
At one time it was thought that I had a left-sided thoracic outlet syndrome. Comes to find out, I have a left ulnar neuropathy. My pain originated in the upper part of my left arm andI had a lot of pain in my elbow. This pain then went down the outside of my arm to my little finger and ring finger Also, my little finger and the outside of my ring finger were numb but painful. (yup, it can happen at once!!) And, cold!! Holy cow, both my hands were cold!!! My left hand was sooo very cold, especially when cleaningsnow off my car or ice off the windshield. Other symptoms I had/have aredecreased hand grip in left handand muscle wasting. Has your doc prescribed Neurontin or Lyrica? Neurontinhas helped me tremendously. Mary, I rememberthe way I was treated...here I could walk OK, didnThe person who brought itall together for me was my neurologist...he believed me. He said that the symptoms I was experiencing was normalfor a person with my diagnosis, and, thankfully, he wrote thisin my consult record. Iare twolinks that might be of some help.http://www.neurologyarticles.com/ There might be some really good info on the emedicine: http://www.emedicine.com/neuro/index.shtml#neuromuscular Here are good thougths going your way Isure hope the doctor will be able to find theproper treatment. Boy, enough is enough, eh? Let us know how you make out on Monday.

Have you tried Neurontin, or could it be [2008-01-11]
thoracic outlet syndrome? At one time it was thought that I had a left-sided thoracic outlet syndrome. Comes to find out, I have a left ulnar neuropathy. My pain originated in the upper part of my left arm andI had a lot of pain in my elbow. This pain then went down the outside of my arm to my little finger and ring finger Also, my little finger and the outside of my ring finger were numb but painful. (yup, it can happen at once!!) And, cold!! Holy cow, both my hands were cold!!! My left hand was sooo very cold, especially when cleaningsnow off my car or ice off the windshield. Other symptoms I had/have aredecreased hand grip in left handand muscle wasting. Has your doc prescribed Neurontin or Lyrica? Neurontinhas helped me tremendously. Mary, I rememberthe way I was treated...here I could walk OK, didnThe person who brought itall together for me was my neurologist...he believed me. He said that the symptoms I was experiencing was normalfor a person with my diagnosis, and, thankfully, he wrote thisin my consult record. Iare twolinks that might be of some help.http://www.neurologyarticles.com/ There might be some really good info on the emedicine: http://www.emedicine.com/neuro/index.shtml#neuromuscular Here are good thougths going your way Isure hope the doctor will be able to find theproper treatment. Boy, enough is enough, eh? Let us know how you make out on Monday.

Listen to this one about Cipro [2008-01-07]
I took Cipro off and on many years ago due to urinary tract infections and had no problem with it. The last time, and I do mean the last time, I took it was approximately 14 years ago. I believe it was the second day of dosing that I became extremely paranoid. I went to a local grocery store to buy groceries. I felt as if everyone was staring at me and talking about me. I paid for my groceries and the cashier gave me mychange, which I did not realize (for some odd reason). Now, I am not a confrontational person at all. I began arguing with the cashier that she did not give me my change back, all the while holding the money in my hand. I caused such a scene. I knew the manager as he went to our church. He came over and asked me what was wrong. I told him the cashier had not given me my change and that she was arguing with me that she had. He reached over and took the change out of my hand and gave it to me. Needless to say, I did not go to that grocery store for a while, as I was so embarrassed. I went home and called the emergency room as I had a feeling it was the Cipro, whatelse could it have been. The nurse told me paranoia can be a side effect. It is now on my chartthat I am allergic to Cipro.It was just horrible.

I have fibro, had to take Cipro [2008-01-07]
here lately for urinary tract infection and my fibro was under some control, then terrible flare again. I now am thinking after reading this owed to Cipro. I definitely will be more aware in the future about any medicines such as this.

fluoroquinolones and fibro [2007-11-05]
I think I posted on this before but my fibro got much worse after 5 days of Cipro, ankles, hips and arms now hurt and last dose of this poison was in April. Please avoid these antibiotics at all cost. They have killed some people and ruined others lives. The damage is done long after the antibiotic is stopped. I Emailed a doctor who took Levaquin and his Achilles tendon tore a year later. Being a doctor, he asked for a biopsy of the cartilage. It was very ratty. He will never prescribe these antibiotics again. None of my other doctors believe theseantibiotics cancause this much damage except the rheumatologist. The only detox is iodine or kelp.

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?

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.

See, I did not give myself that diagnosis [2007-11-03]
of fibro- I told the first pain clinic a rheumatologist, an M.D., had diagnosed me as that- I can only take their diagnosis, right? I asked my regular physician (one that I am not going back to) about 3-4 weeks ago COULD THIS BE costochondritis??? I went in as workin one Saturday and he came flying in- told me he only had time for 1 problem, which was the most severe - I chose the fibro and then had shingles also so had to turn around and make appointment with dermatologist. I told the first pain clinic make a diagnosis and just treat the pain. I am so sorry I ask could it be or what another physician told me it was- I never made the diagnosis of fibro- knew no one with it and never knew about it before being diagnosed by a licensed M.D. I could take my medical records from 1 place to the other but they have no time to go through those either.

I understand, but I'm just saying [2007-11-03]
I've found MDs to be funny about that kind of thing. I feel terrible for you because nobody is taking time with you. Only having time for one problem. Arrgh. (Sorry doc, but the human body doesn't cooperate with your rules). Believe me, I've been there with my mom when she was at the MD, thinking I could help her avoid the wrong trigger words at the orthopedist's office, but we still said the wrong word, which caused the MD and nurse to spin on their heels and leave the room mad. The wrong word? Shoulder instead of arm. When we had called, Mom said she had fallen and thought she broke her arm, and they said come right in. We filled out the paperwork and I wrote out how she fell and was having arm pain, pain moving into her shoulder. They never read my description, and just asked mom why she was there. Mom said shoulder pain, and she was about to explain how she had fallen off a ladder, but they made the snap judgment that she was back for chronic shoulder bursitis just because she said the word shoulder. I sat there in stunned silence after they left, wondering what we'd said wrong to make them mad, and finally it occurred to me they thought the front desk had given an acute spot on the schedule to a chronic pain problem, and they were mad. They punished us for about 40 minutes before the MD came back in, and I emphasized that Mom had fallen TODAY from a ladder and thought she broke her arm, but now the pain was in the shoulder. So then the MD took care of the problem. We had to beg the nurse for the shoulder sling the MD said she should have, assuring her this was a new injury. The only reason I was able to figure out what we had done wrong was because I had worked there years before, and I knew how they were.

Went to a clinic several years ago but [2007-09-29]
for a different reason, foot pain and get this, after say 6-7 years of putting up with that, a person here on MTs told me they had similar, suggested trying arch supports, did, wear them all the time and almost 99.9% improvement! I have no problem at all with signing consent form as I did in the past nor do I care about random testing. I did attend the arthritic swim classes and the pain was so bad. As I said before, want just enough to take the edge off, don�t like being zonked because it takes all to do this job. I have been so disappointed in the fact feel like I have had to do my own doctoring for anything and now the fibro seems to have settled in the rib cage. This has been going on now since at least the first of August, not relenting at all. I am in my 60s and most of the drug scene came after I was grown so I am definitely not a drug seeker. I understand how the clinics work- I could go for a patch, salve, ointment, whatever as long as I can take the edge off of this terrible pain that I have had to suffer through without any assistance from my primary, rheumatologists, etc. I have lost a lot of respect for the medical community in that I have had to grasp at straws just trying to assist my own self. You can believe it when I say I have spent the last 6 or so years hunting, seeking, trying to get relief without the pain clinic- I self-referred myself there- no physician did that for me- knew they were there but trying to take care of myself not going to the pain clinic, didn�t happen.

SLE [2007-09-22]
Yes, I have SLE, Crohn I just found out I also have, according to a rheumatology specialist I went to at McBride Clinic in Norman, Oklanoha, I have Diffuse Connective Tissue Diseases/Mixed Connective Tissue Disease. WHEW! I also found out that polymyositis and dermatomyositis are autoimmune diseases/rheumatological, but I always knew them to be part of the 40 different neuromuscular diseases that the MDA covers. I take Remicade infusions for the Crohn I also have a Morton With your SLE, which bothers you the most, the heat or the cold,cooler weaterh? ttyl

I saw the reply about the good info you gave [2007-08-21]
and get this- I was watching a talk show this morning with wife complaining about the fact her husband in chronic, constant pain and yet no one wanted to give him anything for pain. The husband died but wife (along with others on the panel being quizzed) was stating the fact of his syndrome which they later determined him to have and I could not believe when the moderator asked the wife - well, are you a doctor- wife said no and the moderator then said- well let the doctor talked about this! Unbelievable in the fact that most of us MTs KNOW just how wrong doctors can be sometimes. I remember going up against the physician 1 time asking for Megace for now deceased husband, he was losing weight, not eating and I KNEW Megace would increase appetite - I had typed on AIDs patients as well as pts with cancer. Doctors do not know it all and I am more than glad you were able to suggest something this person with the pain/low energy might try. Good for you!

I'm not sure it's the ciprofloxacin that [2007-05-18]
your doctor was talking about. When I googled ciprofloxacin and fibromyalgia, the articles that came up all seemed to talk about how the infection can get into connective tissues, blood and organs, and be resistant to the medications, but it is supposedly the infection causing the pain. They discuss longer courses of treatment. You might want to look further into this. Maybe you can get a link from this. Otherwise do the Google I did. [RTF] IDENTIFICATION AND TREATMENT OF CHRONIC INFECTIONS IN CFIDS AND ... File Format: Rich Text Format - View as HTML Fibromyalgia Syndrome (FMS) is characterized by muscle pain and tenderness ... cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1500 mg/day), ... www.immed.org/Fatigue%20Illness/reports/FMSurvivorNewslett00.rtf - Similar pages

It is hard to be sure with patient anecdotes, but [2007-05-18]
unfortunately I did find some medical websites discussing rare side effects and drug interactions, like below. (Who knew you shouldn't consume caffeine with Cipro?? And how long are you supposed to wait? Darn, I believe I took today's Levaquin with my coffee!) ... Avoid giving to adolescents, pregnant or lactating women, those with known neurological problems. Drug interactions: Ciprofloxacin interacts with anti-asthmatic drug theophylline (also a component of caffeinated drinks) and can cause respiratory failure, seizures and cardiac arrest. Caffeinated drinks should be avoided. Patients should avoid taking ciprofloxacin with antacids. Adverse reactions and side effects : NOTE: all such reactions are rare. Neurological side effects ranging from dizziness to tremors, hallucinations, psychosis and convulsions have been seen in small numbers of patients. As with many other antibiotics it can kill the healthy bacteria of the gut and give rise to a disorder called pseudomembranous colitis. It can also make users sunburn easily and can cause muscle or tendon inflammation or damage.

joint pain [2007-05-11]
It is from the Cipro I took. it binds to connective tissue. Please pray for me. I hurt all over. It has been almost a month since I took it and am very scared.

joint pain from fibro [2007-05-07]
Hi, Anyone have joint pain, like in your ankles, etc? What about upper body muscle weakness? I am still suffering the after effects of Cipro. Scared to death. Am going to doc this morning. Please pray for me. Thank you.

Barley Greens [2007-04-26]
Hi, I don't remember who takes the Barley Greens but am interested in this. If you could let me know the brand you take. Also now after a dose of Cipro, it has gone into my connective tissue and increased my fibro. I am filing a complaint with the manufacturer. Avoid this antibiotic at all cost! It goes into your connective tissue.

Cipro [2007-04-22]
I didn't take the Diflucan as it mixes with valium that I take for anxiety and muscle spasm but the doctor says it is okay. I took some coconut oil as it kills yeast. I am eating yogurt. I am eating some sugar but not as much as usual. I need to gain weight. The cipro made my body hurt a lot worse and I pray it gets better.

I don't feel well after Cipro either. [2007-04-21]
I don't have fibro, although I did have a few years in my 20s when I had a lot of pain (but not as many areas as would be called fibro). But I know Cipro is one that makes me feel like I have a UTI, which is weird, and I always have to take Diflucan afterward to clear up yeast. Can you take that? Usually they just have you take it a day or two. If you have liver problems it might not be a good thing for you. You can go to a healthfood store and get probiotic pills to try to restore your normal flora. Most of these need refrigeration. If you could possibly get your calories without sugar or simple carbs, it would help your fibro because sugar promotes inflammation. Hope you feel better soon.