I'm so over myself, my symptoms, the fear, the worry, the obsession-I don't even know what's real anymore.
Last year I was recovering from mind body symptoms from burnout, I knew it was mind body because of the stressful event prior and I hadn't taken any drug or anything to cause the symptoms I had. I was having success- down to my last symptom of jaw pain and was really feeling my nervous system begin to finally unclench and relax back into life. It took a lot of time and work but was happy where things were going in Oct.
Then mid Nov, I got a UTI - *Past important info*-I have bad health anxiety-especially any situation where I have to take an antibiotic. 17 years ago I got floxed from 2.5 pills of Avelox, I made a full recovery after a year but it was hard (20 plus weird symptoms including neuropathy) and took a lot of mental strength and mindbody work (accidental-didn't know that's what I was doing at the time) and I healed. I worry anytime I have to take a new antibiotic or even ones I've had before because I react to many of them, though never as badly as Avelox.
While at the ER for the UTI, I discussed what antibiotic I could take safely, I thought we had settled on an antibiotic I had taken before, but when I went to fill the prescription, it was a different one I had not taken before (Macrobid). The test they did at the ER was negative because I had flooded the sample drinking too much water trying to get rid of it naturally all day with no luck. So I thought maybe it was just irritation/anxiety etc, instead and didn't take it. Felt ok the next day, the symptoms were a little less, then the following morning at 3 am I woke up with horrible back pain and peeing visible blood. Completely in a panic, I broke down crying because I knew I had to take the antibiotic and I was scared. I took the first pill and within 2 hours I had awful nausea.
The nausea and stomach pain were uncomfortable, so I went to urgent care and said I wanted to be on a different antibiotic. Worried about my UTI symptoms, the doctor said no, and that I needed to stay on the antibiotic because it was common side effects and changing it would be worse-it was only for 5 days, then I was given meds for the nausea. At the time, I didn't want to be a hypochondriac, knowing I can over think, and freak out over things that are not really bad-I decided to trust the Dr.
Over the next 5 days I had horrible GI issues (common side effect) abdominal pain, gas, bloating acid reflux weird stool color etc. I had a bad headache. I had IC symptoms on day 4- thought the UTI was coming back. On day 5 I got burning in my private area that I thought was a yeast infection.
A week after finishing the antibiotic and the symptoms hadn't improved, I tested for UTI, yeast, BV, it was all negative for any infections, I took probiotics, changed my diet and could not fix my GI symptoms. I had horrible anxiety over all these symptoms and was totally freaking out that I got more mind body symptoms (GI and IC) that would take me a long time to try to heal like the previous year. 3 weeks after finishing Macrobid, my mindset at the time was wishing it was a drug reaction, that would maybe just all clear up on its own. A couple days after that thought the neuropathy started in my feet- pins and needles- within two 2 weeks of getting it, it spread body wide. I wasn't afraid at first, almost happy, thinking it would be short lived and I could then move on.
When over a month went by and the GI, bladder, and neuropathy symptoms were not getting better, only the burning vaginal area cleared up. I googled, found the toxicity forum, then found all the horror stories of people with nerve damage, not healing etc. I freaked out that maybe all of it including the GI and bladder symptoms were nerve issues too. It's been 7 months now-I know I'm stuck in fight or flight, the bladder symptoms are almost nonexistent, the GI issues are maybe 20% better with a strict 10 food limited diet, and supplements and MiraLAX (I struggle with all the symptoms of visceral hypersensitivity). And the neuropathy has been gradually getting worse, the sensations expanded to include burning, itching, waterdrops, stinging, zaps, numbness, and arthritis type aching pain in feet and hands especially. It also happens more frequently, and of course my fear and anxiety has been off the charts. The small fiber neuropathy forums send me off the deep end, their filled with people begging for death because of how bad their pain is and how their bodies are falling apart, many can't walk, use their hands, etc. etc. and it all just progresses, but it's like a car crash and I can't stop reading googling etc. I've tried many times to stop, but whenever my pain gets bad, I'm right back on-it's an addiction.
I've seen the Neurologist, Immunologist, and GI specialist. I've had so many tests, 95% of them have come back negative/normal except high thyroid antibodies (thyroid numbers all still in normal range)- so subclinical Hashimoto's that may or may not ever turn into something. However because of that I am freaked out about autoimmune issues that could be causing the neuropathy. I've had the skin biopsy for SFN, I've had the QSART for SFN, both have come back negative and yet I am so scared I still have it and these tests are just too early to show the damage because that can happen. The antibiotic I took (Macrobid) is known to cause neuropathy including SFN which makes it even harder to dismiss as TMS. I'm having a hard time trusting the Dr.'s and tests right now due to how bad my symptoms are- I'm not sure what to do. All the testing and Dr.'s visits only seem to add to my anxiety as well and my symptoms flare even more. I am so sick with fear, especially when the symptoms ramp up at 3 am- I'm better when they are more manageable. My mind is stuck in regret of the past and fear of the future. I even got an email from Dr. Schubiner and had a consult with Dr. Stracks. Every mind body expert I've talked to has said this is mind body. Why did have to be neuropathy of all things? I know the anxiety forum has people talking about their neuropathy symptoms, and they just don't seem as bad as mine, I hate that my symptoms seem to mimic perfectly-with all the sensations, worse at night, painful feet making it hard to walk, fingers wrinkled outside of water and not wrinkling in water etc. etc. It makes it so hard to trust that it's just TMS. I feel so crazy...
Last year I was recovering from mind body symptoms from burnout, I knew it was mind body because of the stressful event prior and I hadn't taken any drug or anything to cause the symptoms I had. I was having success- down to my last symptom of jaw pain and was really feeling my nervous system begin to finally unclench and relax back into life. It took a lot of time and work but was happy where things were going in Oct.
Then mid Nov, I got a UTI - *Past important info*-I have bad health anxiety-especially any situation where I have to take an antibiotic. 17 years ago I got floxed from 2.5 pills of Avelox, I made a full recovery after a year but it was hard (20 plus weird symptoms including neuropathy) and took a lot of mental strength and mindbody work (accidental-didn't know that's what I was doing at the time) and I healed. I worry anytime I have to take a new antibiotic or even ones I've had before because I react to many of them, though never as badly as Avelox.
While at the ER for the UTI, I discussed what antibiotic I could take safely, I thought we had settled on an antibiotic I had taken before, but when I went to fill the prescription, it was a different one I had not taken before (Macrobid). The test they did at the ER was negative because I had flooded the sample drinking too much water trying to get rid of it naturally all day with no luck. So I thought maybe it was just irritation/anxiety etc, instead and didn't take it. Felt ok the next day, the symptoms were a little less, then the following morning at 3 am I woke up with horrible back pain and peeing visible blood. Completely in a panic, I broke down crying because I knew I had to take the antibiotic and I was scared. I took the first pill and within 2 hours I had awful nausea.
The nausea and stomach pain were uncomfortable, so I went to urgent care and said I wanted to be on a different antibiotic. Worried about my UTI symptoms, the doctor said no, and that I needed to stay on the antibiotic because it was common side effects and changing it would be worse-it was only for 5 days, then I was given meds for the nausea. At the time, I didn't want to be a hypochondriac, knowing I can over think, and freak out over things that are not really bad-I decided to trust the Dr.
Over the next 5 days I had horrible GI issues (common side effect) abdominal pain, gas, bloating acid reflux weird stool color etc. I had a bad headache. I had IC symptoms on day 4- thought the UTI was coming back. On day 5 I got burning in my private area that I thought was a yeast infection.
A week after finishing the antibiotic and the symptoms hadn't improved, I tested for UTI, yeast, BV, it was all negative for any infections, I took probiotics, changed my diet and could not fix my GI symptoms. I had horrible anxiety over all these symptoms and was totally freaking out that I got more mind body symptoms (GI and IC) that would take me a long time to try to heal like the previous year. 3 weeks after finishing Macrobid, my mindset at the time was wishing it was a drug reaction, that would maybe just all clear up on its own. A couple days after that thought the neuropathy started in my feet- pins and needles- within two 2 weeks of getting it, it spread body wide. I wasn't afraid at first, almost happy, thinking it would be short lived and I could then move on.
When over a month went by and the GI, bladder, and neuropathy symptoms were not getting better, only the burning vaginal area cleared up. I googled, found the toxicity forum, then found all the horror stories of people with nerve damage, not healing etc. I freaked out that maybe all of it including the GI and bladder symptoms were nerve issues too. It's been 7 months now-I know I'm stuck in fight or flight, the bladder symptoms are almost nonexistent, the GI issues are maybe 20% better with a strict 10 food limited diet, and supplements and MiraLAX (I struggle with all the symptoms of visceral hypersensitivity). And the neuropathy has been gradually getting worse, the sensations expanded to include burning, itching, waterdrops, stinging, zaps, numbness, and arthritis type aching pain in feet and hands especially. It also happens more frequently, and of course my fear and anxiety has been off the charts. The small fiber neuropathy forums send me off the deep end, their filled with people begging for death because of how bad their pain is and how their bodies are falling apart, many can't walk, use their hands, etc. etc. and it all just progresses, but it's like a car crash and I can't stop reading googling etc. I've tried many times to stop, but whenever my pain gets bad, I'm right back on-it's an addiction.
I've seen the Neurologist, Immunologist, and GI specialist. I've had so many tests, 95% of them have come back negative/normal except high thyroid antibodies (thyroid numbers all still in normal range)- so subclinical Hashimoto's that may or may not ever turn into something. However because of that I am freaked out about autoimmune issues that could be causing the neuropathy. I've had the skin biopsy for SFN, I've had the QSART for SFN, both have come back negative and yet I am so scared I still have it and these tests are just too early to show the damage because that can happen. The antibiotic I took (Macrobid) is known to cause neuropathy including SFN which makes it even harder to dismiss as TMS. I'm having a hard time trusting the Dr.'s and tests right now due to how bad my symptoms are- I'm not sure what to do. All the testing and Dr.'s visits only seem to add to my anxiety as well and my symptoms flare even more. I am so sick with fear, especially when the symptoms ramp up at 3 am- I'm better when they are more manageable. My mind is stuck in regret of the past and fear of the future. I even got an email from Dr. Schubiner and had a consult with Dr. Stracks. Every mind body expert I've talked to has said this is mind body. Why did have to be neuropathy of all things? I know the anxiety forum has people talking about their neuropathy symptoms, and they just don't seem as bad as mine, I hate that my symptoms seem to mimic perfectly-with all the sensations, worse at night, painful feet making it hard to walk, fingers wrinkled outside of water and not wrinkling in water etc. etc. It makes it so hard to trust that it's just TMS. I feel so crazy...
