Not sure what to do anymore...

[katfree]

I haven’t written a post on here in a really long time but I have no one to talk to currently and I’m feeling really scared and low. I’ve had health anxiety for quite a few years now thanks to several very serious health conditions that were missed completely or misdiagnosed and have left me with a multitude of very frustrating ongoing problems. I started having trouble believing or trusting doctors for a long time until I found my most recent doctor who has empathy for my past medical problems and is most of the time understanding of my need to see her more often than most patients.

I guess what triggered my need to post here was the fact that I got extremely sick about two weeks ago the morning I left for a trip to Japan. By the time I made it there I couldn’t hear because of congestion and had a fever. I was able to see a doctor at an international clinic (thanks to the travel health insurance I had insisted on getting, but at the time it was because of other health concerns) and two hardcore antibiotics later I was on my way to try to salvage what I could of the trip. Eventually I could start to smell things again and started coughing stuff out of my chest but a day later I was so sick with gi problems that I actually had to wear an adult diaper, thanks to a change in my anatomy caused by scar tissue from a misdiagnosed recto vaginal fistula I have limited control of my bowel function with severe diarrhea, I apologize for the TMI.

I was given conflicting information on what to do from my insurance back home’s 24 hour nurse line and ended up stopping both antibiotics and then restarting only the amoxicillin a day later. By this time severe groin pain had set in and I still had an on going fever. I managed to make it home, trying to stay hydrated and move around on the airplane between movies because one of my biggest fears is DVTs, deep vein thrombosis, maybe only secondary to heart attacks.

I went straight to the ER when I got home and they barely acknowledged my worsening groin pain and told me that all my blood work and urine culture looked fine and I just needed fluids. I slept for 15 hours that night and upon getting up I noticed some tenderness in my right calf. I immediately started to panic and when it seemed unchanged and almost worse the next day I went to urgent care. They immediately sent me across the hall to their ultrasound counter part to do a leg ultrasound to rule out DVT. Ultrasound came back negative and they said they were unsure of what was causing the groin and low abdominal pain and to follow up with my doctor on Thursday for my scheduled appointment. When I saw my doctor she took one look at my urine sample on the counter and said that it didn’t look right and asked if the ER had told me that I had blood in my urine when they tested it. I told her no and immediately became upset because I suffer from chronic kidney stones and UTIs thanks to yet another medical problem that should have been fixed at birth but was only found by accident when I was 20 thanks to an unrelated test. My doctor was very clear that she didn’t think the leg pain was dvt because of the negative ultrasound and that she knew I was always worried about them, especially after long trips. She agreed to order a smooth tissue ultrasound to see if I had a cyst or lipoma in my calf that may be causing the symptoms and sent me on my way.

Then today happened. I have had a full rebound of the cold sinus flu thing I had in Japan, and to top it all off I noticed that a different area of my calf (below and to the left of the back of the knee) had become tender, so much worse than the original spot. I spent my morning at work moving between trying to practice mindfulness and spending way too much time consulting that horrible horrible dr. Google. By the time I left work I had already scheduled a follow up appointment with my doctor again in a week and I tried to stop touching the area because sometimes I felt reassured by where the pain was but other times I would notice the close proximity to where the ultrasound technician had scanned and I would start to panic.

I got home, ate what little I could with the continuing nausea and went to lie down and use the heat pad that my doctor had recommended for the original tender spot which I figured I should try on this new spot too. After a while I decided to go for a not too hot bath I try to calm myself down. But when I removed my pants I noticed the redness and it scared me. I knew that of course a heat pad would cause some degree of redness but it was so much darker and angrier looking directly over that new spot and didn’t initially subside when the other places did. I took a picture so that I would have documentation and decided to call the 24 hour nurse line again because urgent care was closed, as was my doctors office, and I was trying to show that I could be rational by not running straight to the ER. The nurse I got was lacking in any kind of bedside manner and wouldn’t let me elaborate of the questions she was asking so that I could explain about the long haul flight, the dehydration from being sick, the off and on fever I was still fighting, etc. Her response was that maybe I had a reaction to the water in the tub, which is stupid because I take baths all the time and this doesn’t happen. She was just like well we know it’s not a blood clot so that’s good, and I just don’t believe her, I desperately want to but I don’t.

This unsatisfying interaction sent me right back to dr. Google which of course sent me spiraling into a panic. Why hadn’t they also done a d-dimer test, why didn’t I go to a vascular only ultrasound facility where that’s all they are trained to do, why didn’t I wait a few more days for this symptom to show up before going in, it just went on and on. By this time the redness had pretty much faded but my calf now hurt in that spot and in the more central area of the back of the calf whenever I bent my knee, especially when the calf touched the back of the thigh.

I have started to feel hopeless and like I don’t know if I can go through another big round of doubt and worrying about what the chances are that something big was missed again. I have been crying and wondering if I would have the ability to end it all, so that they could do an autopsy to figure out all my health issues, which I know sounds crazy and doesn’t make sense but I’m not really thinking straight right now. To be honest the only thing really holding me back is my family. My mom suffers from severe depression and suicidal ideation and has tried to kill herself several times and I have always had to be kind of the rock of support for both my dad going through that and for my mom as almost more of a counselor than a daughter a lot of the time. My husband tries his best to be supportive but I know it gets old fast when the health anxiety is going full force.

If you made it this far in the message please know that I really appreciate you and the time you put in to read this. It’s such a strange feeling to be so afraid of sickness and death but to feel suicidal at the same time. I took 2 clonazapam and an oxycodone that I have for my kidney stones in hopes of alleviating both the panic and some of the pain. We’ll see if it helps at all. I’m just so tired of it all.

Thanks for reading.

[jessiejakes]

Hi you have health anxiety which is understandable seeing you have had some health issues in the past that wasn't diagnosed .so you lost your faith in doctors etc.But it sounds like you have found yourself a very good doctor now who understands the problems you have had in the past.so that's very positive you also mention you have a husband ? Does he understand your anxiety ? Does he not support you ? Think of all the positives here ? At least you have husband and a good doctor.alot of us on this site live on our own and have no one to support us.start to look at the support you have and you will get through this but you must also except your doctor's advise when she tells you it's not serious. She knows what to look for and you need to put your trust in her so stop worrying and you keep telling yourself you have found a good doctor and have a husband to support you.you are going to be fine.

[katfree in reply to jessiejakes]

Although I appreciate your reply and perspective, it is hard to think positive when my symptoms are even worse today and my husband doesn’t know how to interact with me when I’m anxious like this so he just avoids me. My doctor has started blaming everything on fibromyalgia and although I do trust her to some extent, she has begun to act like a previous doctor I had who blamed every single symptom on one condition whether they were related or not. I can’t talk to my family because my mom will try to one up anything I say with something that’s going on in her life and my dad, like my husband, chooses to avoid it all together. So I don’t really have much of a support system and that is why I am feeling suicidal, other than the fact that I would like to beat whatever thing is going on in my body to the punch.

So I’m sorry that most of the people on this site don’t have a good support system, that’s not fair, but just because someone is married and has a semi competent doctor doesn’t automatically mean that they have a good support system either. Like I said in the beginning I appreciate your perspective but I don’t think you understand what I’m going through and maybe no one else will either. And there’s not much I can do about that I guess. Thanks for your time.

[jessiejakes in reply to katfree]

Hi I'm sorry you are not getting support from your husband and family and I hope you do get some support from your doctor hope you are soon feeling better.have you read any Claire Weekes books ? She gives excellent advise on anxiety etc.