I suffer from Chronic Pain issues, thanks to severe Fibromyalgia, as well as various skin disorders such as allergy to sun exposure (causes blistering & itchy spots that scar after, body-wide). A while back I had some skin biopsies done by a dermatologist, and the report that came back said I had Connective Tissue Disease. What on earth is THAT?! I was told that more testing/biopsies may be needed, but before I continue on with being a guinea pig, being spliced and diced, I'd like to know more about the whole Tissue disease thing! I was also tested for Lupus, which came back as negative, so that's not what is causing all this fuss (thank God!).
Help?Thanks so much!
President Lincoln had a connective tissue disease (Marfan, as I recall), so you are in good company. The connective tissues are the "glue" that holds the body together--the elastic tissue. The strength and elasticity of that tissue varies widely. For example, some people are put together with tight "rubber bands" so they cannot do the splits. Other people are put together with loose "rubber bands" and some may call them "double jointed". The skin, ligaments, bones, internal organs, pretty much everything is connected by the elastic fibers--connective tissue.
The question is where do you fit on the connective tissue spectrum... tight? loose? And what label or diagnosis do you have? Doctors can go through great lengths to "label" someone (hence the ginea pig feeling). But, are these labels valuable to you? The treatment for most "diseases" (or normal variants) of the connective tissue is symptom specific not pathology specific. So, the label does not affect the treatment.
On the other hand, because most connective tissue disorders are inheritable, you may want to know the exact cause (like Ehlers-Danlos or Marfan or another) and seek genetic couseling prior to having children. Each type has a different inheritance pattern.
Continuing down the road of endless test, requires that you and your doctor understand how the diagnosis/label will affect the outcome for you and your offspring.
Dr. Christina Lasich, MD
There are a wide variety of connective tissue diseases. Mixed connective tissue disease is an autoimmune disorder that occurs then the immune system attacks the bodies tissues, in this case the connective tissues of the body. Lupus is actually a type of connective tissue disorder - which is presumably why you were tested for it.
The course of the disease is apparently quite variable; at one point you can test positive for it only to have it fade away or it could get worse. The treatment appears to be similar to the standard therapies for other autoimmune diseases and may include corticosteroids if you have flareups.
There are also other possibilities; you'll have to wait for the outcome of your tests to determine whats going on. Good luck!
You need to check your medical records to see if you took any quinolone antibiotics in the days/weeks/months prior to developing all your connective tissue problems! Drugs like Cipro or Levaquin are HORRIFICALLY destructive and the side effects often don't manifest until AFTER you've finished the drugs. Everything you just described can be caused by these nasty drugs (aka POISON).
I took quinolones for ear/sinus infections for years and suddenly lost my hearing in one ear in 2006. Docs couldn't figure out why and then i suddenly started having chronic hip/back/burning muscle pain in 2008. I've gone to every doc in the world in every specialty and no one can help me. I'm 43 yrs old and am cripple like an old lady! Diagnoses (or lack thereof) have included Epsteins barr/chronic fatigue, fibromyalgia, bio-toxin illness, etc...
What you wrote struck a chord with me - i think the antibiotics are the cause of my problems! What can i do if indeed the quinolones caused all this? Is it reversible? Are there any drugs/supplements/minerals/alternative treatments that can help me?
I've already spend thousands of $$$ trying to feel better. I can't keep up with my young kids and am in constant burning pain in all the muscles in my body.
Please help me to continue this research - i think you are on to something!
Julie, unfortunately there is no cure or treatment for the horrific damages these drugs cause. 95% of doctors will laugh in your face if you tell them an antibiotic crippled you. All I know is that I was 30 years old and TREMENDOUSLY healthy and active before I took just twelve Ciprofloxacin (Cipro) pills in October of 2009 for a *suspected* UTI (no bacteria was ever even found). I have been unable to walk ever since and have lost absolutely EVERYTHING. And there are thousands of other victims of these drugs online. So many in fact that they've set up support groups to try and help one another. What you have described has "quinolone toxicity" written all over it. While your physical ailments are very real, the damage these drugs cause is very stealth. It often doesn't show up on conventional x-rays, MRI's or even blood tests. This is why doctors start labeling us as having fibromyalgia, CFS--even M.S.! Cipro/Avelox/Levaquin all induce symptoms that mimic auto-immune disorders. Since symptoms often come on in a delayed fashion--AFTER you've finished taking the drugs--very few people ever make the connection! Therefore these reactions go vastly underreported to the FDA.
The higher the dose or the longer you take a quinolone antibiotic, the greater your chances of becoming "floxed" (the term people use for being poisoned by these awful drugs). As I said before I've lost everything--my mobility, my independance (had to move back in with my parents clear across the country), my ability to work (I collect SSDI now), my hobbies, my friends, my hopes and dreams, my life savings, my credit is now ruined from all the doctor bills (NO doctor has ever helped me with this). It's all gone. I live every minute of every day in bed now. I honestly wish those pills would have just killed me. I literally have the body of a 100+ year old now--frail, weak and I injure incredibly easily now. All this because Bayer wanted to add another $6.00 to their bottom line. I lost my LIFE to Cipro. Of all the doctors I've seen only ONE will admit Cipro can and does do this to people (she's an alternative medicine doc who has not been brainwashed by drug reps and the drug industry). Google "quinolone toxicity" or "floxed" for more info. Better yet look up the quinolone drugs you've taken on askapatient.com and read all the horror stories from other patients (or, as I call them, unsuspecting victims)! Chances are many of their stories will be similiar to what you've experienced. Keep in mind that no two people get hit in the exact same way or to the same severity--quins are capable of wreaking havoc on nearly every system in the body, so no two people ever suffer the exact same damages. Some get hit worse than others. Quins have a real propensity to strike connective tissue though--tendons and joints especially--so that's usually a common theme. What the drug companies are doing with these POISONS is criminal!!!
Oh and regarding your question about whether there are any drugs/supplements/minerals/alternative treatments that helps with this--unfortunately from my experience I have to say no. I've spent literally thousands of dollars on every supplement under the sun (I spent the first six months of this nightmare reading other peoples' horror stories and every time they'd mention a supplement I'd buy it!). None of it did a damn thing. Some people will swear up and down that a supplement or some alternative treatment helped them. For most of those people, I suspect they'd have gotten better with or without it. Many people do get better from quinolone toxicity over time, but it's often a LONG time. We're talking years. It all depends on how severely you were hit. I just want to warn you because as soon as you start researching quinolone toxicity you'll likely run into all kinds of flox victims who will say "X" "Y" and "Z" helped them. From my experience it's all hogwash. And unfortunately doctors--the very people who CAUSE this--are of absolutely NO help correcting it. I think it's unconscionable that Cipro's warning label states, "If you develop any tendon problems see your doctor immediately"--implying that a doctor can actually do something about this. Then you go to the doctor and they LAUGH or roll their eyes at you!!! Unbelievable. It's like being in the twilight zone.
THIS WILL NOT BE A FANCY TYPED LETTER. I TRY AND PUT A SMILE ON MY FACE. I SPEND MANY HOURS OF THE DAY WEEPING AND CRYING.I KNOW HOW YOU ARE SUFFERING, I'VE BEEN SUFFERING FOR A LONG TIME. HAVE GONE TO SO MANY DOCTORS AND SPECIALIST IT IS NOT FUNNY. THEY WANT YOU TO FEEL THAT A LOT OF IT IS IN YOUR MIND AND YOUR AGONY IS NOT REAL. SOME TIMES I FEEL LIKE I AM A HUNDRED AND 25. I HAVE TAKEN MANY CIPRO'S AND ALL KIND OF ANTIBIOTICS. THEY HAVE TAKEN THE REGULAR TEST FOR LUPUS AND OTHER STUFF. I HAVE PRAYED, HOPE, WISHED THAT GOD WOULD SEE FIT FOR ME TO BE HEALED. I DON'T THINK IT'S HAPPENING. IT IS A LOT OF US OUT THERE, AND IT DIDN'T COME FROM THE CIPRO. AT 24 I HAD MY FIRST PULMONARY EMBOLIS. HAD ANOTHER BAD ONE 24 YEARS LATER.I THOUGHT THAT WAS AN OLD FOLK DISEASE. ALMOST 2 YEARS AGO MY ARMS AND BACK WERE HURTING SO BAD THEY PUT ME IN THE NUT HOUSE IN THE HOSPITAL, IN THERE FOR 2 WEEKS. WENT HOME THE SAME WAY I WENT IN. A YEAR AGO I HAD PNUEMONIA, CARBON MO. POISIONING AND SUGAR SKY HIGH. I WAS IN 2 DAYS AND OTHER CARE WAS ADMINISTERD AT HOME, OXYEN,NURSES ETC. I HAVE LOST EVERYTHING TOO. I HAVE HAD SO MANY MISFORTUNES, I CANNOT GO YHROUGH IT ALL. DON'T LET ME FORGET MY POOR KNEES, BURNING. THIGHS BURNS AND HAS HARD KNOTS THAT CAUSE SO MUCH PAIN. I'M TIRED OF THE BED MOST OF THE TIME THAT IS WHERE I AM. HAVE MERY ON ME, LORD AND THESE OTHER SOLDIRES.
Sirporah Hughes, your health problems may not be as a result of taking Cipro, but mine are. How are you so certain antibiotics aren't to blame for your ailments? You yourself say you've taken Cipro (and many other antibiotics) many times and now suffer from "mysterious" chronic pain and health problems that do not show up on any tests. That is EXACTLY WHAT CIPRO CAUSES!!! I am 32 years old and literally feel like I'm 132. My body has been DESTROYED, and it's 100% as a result of Ciprofloxacin. Cipro is by no means the only antibiotic that can cause this, either. ALL fluoroquinolone antibiotics are capable of destroying the human body. These include Cipro, Levaquin and Avelox (those are the most common). More than half of the antibiotics in this class have already been yanked from the market for their horrific safety profiles. And let me tell you, the ones that are left are no less destructive! These drugs are absolute POISON and the fact that their destruction evades modern testing allows them to stay on the market despite the countless lives that have been destroyed by them.
JEFF AND JULIE, SUFFERING IS MY MIDDLE NAME. I WATCHED MY ONLY SISTER SUFFER AND DIE. WE WERE JUST ONE YEAR APART I'M THE OLDEST. SOMETHING TORE HER BODY APART FROM HER HEAD TO HER TOES. TOWARD THE END,SHE WAS AT HOME WITH I V'S IN HER FOR MONTHS WITH ANTIBIOTICS. SHE HAD THRUSH, HER TOUNGE AND THROAT WOULD NOT LET HER SLEEP, EAT, OR BE COMFORTABLE. HER JAW WOULD LOCK UP FOR UP TO A WEEK AT A TIME. IT WAS SO SAD AND DESTROYED ME! SIX WEEKS LATER MY ONLY SON WAS MURDERED IN FRONT OF MY HOME. MY BROTHER TOOK HIS ON LIFE. MY MOM AND DAD SUFFERED AND THEY DIED. MY HUSBAND TOLD ME A MONTH AGO THAT HE DIDN'T HAVE ANY FEELING FOR ME ANYMORE AND THAT HE HATED ME. A COUPLE OF YEARS AGO, I COULD NOT STAND TO BE TOUCHED OR PUT PRESSURE ON ME IN A LOT OF PLACES. I DEVELOPED A SKIN CONDITION CALLED LICHEN PLANUS, MAN DID I SUFFER WITH IT ATE MY FEET AND LEGS TO THE BONES. IHAD IT OTHER PLACES TOO FOR 3 YEARS, I WAS TOLD BY DOCTORS THAT IT WOULD LAST FOR 12 TO 18 MONTHS. I HAD IT FOR 3 YEARS.
Jeff, I was Diagnosed with undiferential connective tissue 9 months ago. It was directly as I was taking Cirpo for a bladder infection. Turned out the infection was cipro resistint. After 2 rounds I was then given Batrim DX. I went from working 7/12 to not able to get up out of bed. When I went to a Rhumo. I tested positive for a HLAB27 Gene factor. I had some really weird things happen to me over the years so I figured my doctor was correct.HLAB27 is a gene factor that most with AS, Lupus and other auto immune type issues have. I was put on 6 months of different drugs to help me 1 sent me to the hospital. Now I am on Plaqunil and Humira.
One day I was feeling down! I always get told I don't look old enough to have adult children or a grandaughter. However, When I get up to walk away I look 80....
On days I feel really bad I start pounding away on the computer to see if I can find anything to help me. Anything NEW??
I started thinking when did all the HOKEY things start happening to me. I always start my story with I had pnumonia about 6 years ago and after that I had my knee pull out of socket, my ear started bleeding and the specialist had no idea why... no infection, plantars fashitis...not a runner, Iritis... for no apprent reason, always struggling to keep up.... was never a issue before. So I started thinking hmmm.....I have to figure out what trigggered this terrible spiral because my kids and grandkids could have the same genetic factor. So I said to myself what was I on back then. I remembered and googled it (leviquine) then popped up cipro I almost fell out of the chair.
I was on Leviquine. (Highest dose ) for almost 3 weeks with a steroid when I had pnumonia until I was finally hospitilized to get rid of it. And I was on Cipro more then once for reaccuring UTI. Then it hit me like a train... I could hardly get out the bed and bright light made me crazy. I felt Nuts!!!
I flooded my Doc with 65 Pages of info about FLOXING I figured he was going to dismiss me like most claim the Doctors do. He did not, he said it better explains why I was so all over the map when I came in. So I said could this have triggered all the other things?
He said that adventually the posion would work its way out of my system. However, any damage that was done would not just repair itself. After some of the stories I have heard researching I feel like one of the lucky ones. My doctor went on to say that I do have a auto immune issue that would have reared its head most likely adventually. But I know many that function normally with these issues. I am far from able to function in normal life or work. And emotionally I get overwhelmed and ruffled at the slightest.
I am scheduled to have a MRI of my Hip and Shoulder. So we shall see.....
But please don't give up hope. I pray that something gives you releif and I pray that it comes soon for you!!
These drugs are over prescribed they were created to combat airborn anthrax.
The way they work so well is by altering the DNA make up of the bacteria. So no wonder your immune system would get confused.There use was never meant to be a frontline defence for a doctors office. However, they are prescribed like candy......
Please someone help me. I had cfs and a mitrochondia disorder since 25. I have taken alot of cipro in canada.. I moved down to the usa to marry my husband after waiting 10 years.. I have been given levaquin with prednisone 3 times in a year. The first hit was my shoulder, then it hit my buttock tendon.. severe acid burning pain that never healed. Then cns, autonomic damage, now my spine. The pain is like bone cancer pain and I can only walk a few feet. Doctors are trying to tell me it is fibro,, I had fibro ( which I think is low level cipro damage ) and it is NOTHING like this... I have gone everywhere, tried everything,, also suffer major depression disorder since age 16 and am not taking anything as I cannot process drugs... I am destroyed and ONLy hanging on for my husband.. I cannot do this pain is is way above my pain tolerernce.. I can live with the shatterted tendon and buttock but not the back connective tissue pain..
I cannot drive nor walk, I am in a new country and dont know anyone.. Please can someone tell me what I can do.. I cant hang on much longer..