Erica G’s Story
I was put on Cipro about 16 years ago when I had my sixth UTI in a year and my ob/gyn sent me to a urologist.
I had an upper and lower GI done and ultrasound and MRI in 1/2010 and if my memory serves me I was dealing with the problem for a while. I thought it was a food intolerance and it would kinda come and go. My symptoms were pain very low just above pubic bone area and high up in the sternum area, nausea and the most horrendous smelling gas that you can possibly imagine. My stomach would tend to act up in the evening after dinner. I bet I was dealing with it for close to a year before I went to the doctor about it my symptoms tended to happen in the evening. The tests didn’t reveal any problems with my stomach and the biopsies would have shown gluten and diary allergy and they were fine…yet I couldn’t have dairy and sometimes gluten would set me off sometimes it wouldn’t.
The ultrasound found something suspicious on my liver and that is what the MRI was for. 2 focular nodules were found not thought to be cancer but they wanted me to repeat the test in 6 months to monitor I waited 2 years and re-tested and it was the same. I just re-tested again a couple months ago to my PCP’s urging with all my new symptoms and it had been another 2 years and the MRI revealed no changes.
During all the tummy troubles I was trying to stick to a clean diet full of fruits veggies and lean meats as I had lost weight prior to my stomach tweaking out (intentionally) but with the stomach issues I was gaining it back because I just didn’t know what to eat and I craved carbs to soothe my stomach. My gastro doc wanted to give me meds for IBS that I refused. He put me in the IBS catagory and told me it may be too much fiber in my diet and to try to cut back on fiber. Nothing I did worked I could eat the same thing every day of the week and it would bother me one day and not the next.
I went back to my urologist with my results and asked her if any of me meds from her could be the culprit as my gastro doc suggested it may be a factor. She switched my prophylactic med from Macrodantin to Trimethaprim but left the Cipro alone. My problems continued and I’m not sure when the miraculously went away…I’d say I dealt with it another year or so on and off.
in 2012 I was having hip pain on the right side that brought me to the orthopedic doc and the x-rays revealed that my back was in spasm and the arch in my back was a bit flattened and that my pain was in the area of muscles/tendons. He sent my to PT for several week. It didn’t help at all and at the end of it he ordered an MRI and it revealed a herniated disc but the doc also said many people walk around with them and don’t even know it. I was put on a Medrol Dose pack (steroids) and my pain has continued on and off ever since. It had actually been really good for some time and resurfaced this fall when my symptoms blew up.
In 2013 I started a new job that triggered Anxiety and I began getting Panic Attacks that I have never ever had , ever in my life. I was at the point of debilitating anguish when my family forced me to go to the doctor and I started an anti-anxiety drug, Lexapro which I stayed on for two years. The anxiety and panic attacks are the worst thing that I have ever dealt with in my entire life and out of my whole story, it was the scariest most painful thing. The only problem now when I go to my PCP she has me categorized as an anxious pt and thinks I’m worked up about everything. My recent lab work was labled depressive disorder, when it should had been labeled inflammation,/joint pain! So now I question how seriously she takes me.
In April of 2014 while on our family vacation, our first ever cruise! I began awaking with a numb right hand. As soon as I got home I started researching it and it sounded like I had Carpal Tunnel so I ordered a splint and started wearing it at night right away, It didn’t help much and within a months time I was numb day and night, splint or not and the pain was so intense. I went to the same Orthopedic and he ordered an EMG and it was determined that my nerve and muscle both were not responding to the tests and that I needed surgery asap or risked permanent nerve damage. My surgery was at the beginning of July. The surgeon told me that it was very uncommon to come on that quickly that people in the shape I was in typically use a splint for 1-2 years and that he usually operates on older people. He told me that my case was not typical at all…
I was healing from surgery and much my numbness remained and that was of no concern due to how severe my case was. A few weeks into recovery at one of my visits I was complaining about tendon pain on my right tendon that connects to the thumb and there were little bumps on it. I learned that it is De Quarvain’s disease (tendonitis) and he figured it was because I’m using my hand and wrist differently. A few more weeks went by and my CTS symptoms returned and the DQD was getting worse. At this point I got a new splint. I quit my second job as a banquet waitress around this point because I was already on limited duties and it was highly recommended that I do so incase I was aggravating things.
A couple weeks pass and I call the office in tears that my wrist is in so much pain and I have twinges of it just slightly starting in right shoulder and left wrist. I had a ganglion cyst on the right wrist that was causing so much pain. Doc now gives me a Medrol Dose Pack (steroids) and orders an MRI of right wrist which reveals multiple areas of tendonitis and inflammation and ganglion cyst sac (it ruptured the day before the MRI). Doc is baffled why I have so much inflammation and the radiologist who read the MRI asked in the report, “Does patient have a history of inflammatory arthritis or Lyme?” I then bring up the question to the doc about reading how Cipro can cause these sorts of problems. He said no that’s the Achilles and it involves tears or ruptures, this isn’t what we are dealing with here. You need to see a Rheumatologist, you are young and this isn’t normal don’t stop until you get answers. He ordered some preliminary blood work and sent me off to Rheum.
In the mean time I go to a hand specialist who was an egotistical jerk, he said all it was was me recovering from surgery. I asked about shoulder and left wrist and he can’t find anything wrong with them because I have full range of motion…. He recommended a follow up EMG, which I got. At this point I still had pretty severe readings and the neurologist said it can take a full year for the nerve to heal, so my numbness wasn’t out of the ordinary.
My research continued and I went to my PCP because I was having week long headaches and eye sensitivity and pain and brain fog, confusion, brief moments of amnesia, stored and I could sleep 12 or more hours a day, stiff sore neck I had a couple episodes where I almost passed out and it was frightening. I felt as if I was diabetic as I would crash. On top of all that I was experiencing some breakthrough anxiety mostly PMS related and considered upping my meds. I also told her all about all the tendon stuff and talked about my Cipro use. I asked her if the Lexapro has any side effects that we could connect. She looked it up on her phone and said no. She said the same thing the surgeon said about Cipro, no Achilles rupture no toxicity. She attributed most of my issues to stress. She did some more blood work and labled the reason depressive disorder. She agreed to follow up with Rheum and said that Rheum would do tons more blood work.
I had high hopes for the Rheum. I brought printouts of the FDA warning and highlighted my symptoms and all the reports of all the tests that I’ve had. She did do tons more blood work. She spent tons of time with me told me to start exercising as I had totally stopped due to pain and my ortho’s recommendation. She spent a ton of time with me trying to make me understand doctor terms and I was having a really hard time focusing and she was so fixated on thinking I was overly stressing over all of this and at that point I really wasn’t. She ordered a chest x-ray looking for Sarcoidosis because I have liver lesions and skin lesions called Granuloma Annulare. I had to wait 4 weeks for my follow up and she doesn’t go over test results over the phone! I then saw her and learned that my chest x-ray looked ok. Slight findings that were really inconclusive and not in line with Scarcoids.
She insulted the crap out of me when she basically said nothing was wrong with me and I asked her if she’d look at my wrist that was obviously puffy. She said that the tests don’t show anything. She then told me, “I can send you to UConn and I’ll tell you what will happen, they will put me in the Fibromyalgia bucket and give an anti-depressants which may or may not help. That’s what happens when a doctor says nothing is wrong and the patient insists that something is wrong. Do you want to go to UConn, I can help you get in there.” I was so flabbergasted I said I’m already on an anti-depressant and that isn’t helping this problem! I forgot to ask her if she even reviewed the MRI report from my wrist because I was so flustered. I left and knew I’d never return.
Now the twinge that I had been feeling in my Right shoulder became really painful, keeping me up at night crying in pain, The pain from the wrist and shoulder both radiate and ache through my entire right arm. My right wrist has become worse and I have tweaked the right wrist a couple times to the point that I cried and thought I tore something. I iced it and all was well a few hours later so I wasn’t sure if I had done any real damage or not. The left wrist is also increasingly getting worse. I go back to my ortho and fill him in on the spread of my symptoms and my experience with Rheum and the fact that auto-immune is ruled out. I bring up Cipro again and this time he wants to know details about my Rx history. He then says it is possible but with all that is going on I’d like an MRI of wrist again to look for changes and shoulder.
Those both reveal vast inflammation and tendonitis. I bring up Cipro again and he says this may be what we are dealing with but, we will never know for sure. I told him that I’ve read about magnesium and some other treatments that are supposed to help. He said you are welcome to try them but there is nothing proven to help it’s time only.
He tells me that this is not normal don’t let anyone tell you this is normal aging or anything this is very severe. He said I was in worse shape than a 70 yo man that fell off a 10 foot ladder onto his shoulder. He was surprised I wasn’t in more pain and asked if I wanted a cortisone injection. I told him that I read it wasn’t good if this was FQT. He said he thinks it would really help the shoulder if it were Achilles then it wouldn’t be recommended but the shoulder tendon is larger and can tolerate cortisone. I refused. He suggested a second opinion rheum who has a great reputation but takes months to get in with, apparently he’s still not totally convinced. He said that we if the shoulder pain gets unbearable to call him for cortisone.
My appointment with the new Rheum was mid April.
I saw my urologist to go over my reaction to the Cipro and she basically cut me off and said she didn’t want to spend all of our time talking about my wrist she is interested in my plumbing. She doesn’t think that this is FQT says it doesn’t sound anything like it and talks about Achilles rupture! She doesn’t blame me for wanting a new Rx and gives me one and also changes the Trimethoprim back to Macrodantin. Also she is concerned that the last my last two samples were clean and I was in agony with a UTI.
Currently my right hand has severe CTS and I’m trying to tough it out and avoid bother surgery. I don’t know how much longer I can do that. My symptoms continue to cycle.