I Can Feel Things Others Wouldn't...

[Samantha_38]

I want to know how typical this is, if at all.

Recently I have had a lot of physical illnesses, this is how the PTSD that I've known I had for years actually came out and was diagnosed. My family doctor diagnosed it, and it came out through a time frame that I literally had at least one appointment a week, and was hospitalized several times. I have REAL physical illnesses. My white count will go up, I'll get fevers, I get random pain. Sometimes I feel terrible and all my labs are fine, other times the labs actually do point to something. More frequently lately the tests come back abnormal but they don't add up with what I'm describing I feel and they don't make sense when compared to each other. Its VERY frustrating, and I'm just thankful my doctor hasn't just wrote it off as I'm a "nut-job" and that's it.

Through multiple discussions, he has determined, and I'm starting to agree, that my nerves are just super sensitive. This doesn't mean that I'm not sick, it just means that I can feel things before a typical person can. Most recently I had every symptom of a bladder infection but the tests came back normal. It kept getting worse, I had terrible stomach cramping and back pain. After another week of suffering with this another test revealed exactly what I had been complaining about for two weeks. Another occurrence: I had a pulmonary embolism (blood clot in my long) about a year ago. I woke up in the middle of the night with terrible chest pain. I can't even describe it, it was terrible. They did a lot of tests, after about 3 days of this they finally did a CT and found 3 blood clots, problem is they were not on the side I had pain in. They were also fairly small compared to how big they can get. Through talking to multiple specialists I've been told that small blood clots can cause just as much pain as large ones, it just depends where they are located. Small ones can be hard to see, so its possible I had one or more on the side that I was complaining about but no one could see them. A different specialist told me I shouldn't have had symptoms at all, and she believes in was just a coincidence. So she believes something else must have been causing the pain, but I also had the clots. I'm convinced that I felt the clots, and even though others wouldn't have...I can feel it. There have been several instances like this. Also several instances where I have severe pain, but no one can figure out what is wrong.

My family doctor knows about the PTSD and he's concluded my nerves are super sensitive and it has something to do with the PTSD and the trauma and abuse I sustained for so many years of my life. He says PTSD permanently changes the nerves, and for some reason mine have changed into being ridiculously sensitive to pain and other feelings. Has anyone ever been told this, or had problems like this? I'm so tired of having severe pain for things that no one else would feel. I'm very afraid of what happens if I ever have to stop seeing my current doctor, if I move or for another reason. This nerve problem sounds so far fetched to me I don't know that anyone else will believe it.

 

[arfie]

Yes, I have experienced this. Often enough to wonder if was hypochondria. Still wonder sometimes.

I have come to believe that my mind, or brain, is the most powerful organ in my body. If my brain is responding to painful conditioning I received 40 years ago, my body begins following orders accordingly. Work on processing the memory so that it no longer takes over my brain seems to be effective medicine for it.

Gentle, nerve respecting hugs while you sort yours, Samantha.

 

[Samantha_38]

I'm just starting to open up about it, so maybe that will help. He was the first person I really opened up to about it, although a couple people knew vaguely what had happened. Hopefully this will go away. I know what you mean about the hypochondria, but I don't really start to think I have an illness, I just randomly get symptoms of an illness and they don't go away. Lab results have shown at least sometimes that something in my body is clearly going on, even if doctors don't have an explanation for what. I frequently say, "stupid brain" or "stupid nerves"...at least my doctor understands that I can't control it any more than I could actively tell my heart to beat slower or fast, or tell my liver to stop filtering. Believe me, if I could tell my brain to just "stop" I so would have done it years ago.

 

[arfie]

Nope, justing doesn't work for me, either. My mind has a mind of its own. Changing neural pathways is hard work. There is nothing just about it. Yes, opening up definitely helps.

Your doctor sounds great! I am envious.

 

[MissMacD]

My mental health has made me so physically sick at times. There were years where I kept getting pneumonia and sinus and chest infections. PTSD can do incredibly destructive things to your body. Just because someone can't see your suffering or find the cause of it through a blood test or medical testing doesn't mean it doesn't exist.

 

[TLight]

I can relate.
It feels like my neural net is just on fire most of the time. If I get emotionally hurt, I feel it in my nerves as actual pain. I believe it has to do with the lifelong hypervigilance I've suffered and the nerves change to that hypersensitive state.

I too am attempting to rewire. I believe it is possible.

 

[Samantha_38]

I hate this disease. I know that's not going to get me past it, but I'm just at that point. I just hate it and want it to go away. I hate there was nothing I could have done to prevent it, and because of my abusers now I'm stuck with it forever. No matter how far I get away from them, I still get to take the pain with me everywhere. I hate the mental part, I hate the physical part. I hate the part where I just want to live my life and go to work and school and I get sick and I can't. The part where people get upset because I'm sick all of the time, and the part that makes it so I can't even tell them why. I just hate it.

Arfie - He really is great. Unfortunately my life may be taking me away from him, and I'm really worried about what happens when I get to a new place. It is actually one of my fears of moving...which seems ridiculous to me.

 

[greenleaf]

I just had a thought reading your post, but I'm unclear if there is still something that's not accounted for by diagnoses, and strange lab results that the doctors can't connect with anything, or if you were focusing on your sensitivity to things that the doctor figures out eventually.

If the former... did you get your lab results looked at by a doctor familiar with Lyme disease, as well as the other various tick-borne illnesses that are becoming more prevalent? I don't know where you live; here in the U.S. there is a ton of this, and it's misdiagnosed very frequently. Plus I bet the little buggers occasionally get transported elsewhere... animals and people can carry ticks around.

I had a very good friend who also had C-PTSD, but turned out to have Lyme disease that was missed (by very good doctors who were just behind on this issue) for 8 years. She had fevers, felt horrible, and had numerous strange and shifting symptoms. The doctors blamed all the physical problems on her PTSD, or worse, said she was making stuff up... but I've never seen "fever" in a list of PTSD symptoms (anyone...?) So, now I think I see Lyme disease everywhere, maybe...

Another side to this could be that the extreme stress we're often under does a real number on our immune systems, including the things that regulate inflammation, which is related to pain. I'm not a doctor or chemist though.

 

[Samantha_38]

I've had several lyme's tests they come back negative. I am in a VERY high prevalence area. Unfortunately the "common" test they use sucks. I cannot find a doctor who is willing to run a better test through a different lab. There are different strains of lyme, and I could have a different strain then the "common" test looks for. For now I have to go with my nerves just suck because no one will look any further for Lyme, not even this doctor who I really do like and is a good doctor. Unfortunately Lyme awareness just isn't there yet. The ER doctor I saw with my first BAD outbreak of high white count and fever does believe its Lyme or tick borne, but because he is not a primary care doctor I can't just go see him. His wife has severe Lyme, so he knows the symptoms well, he just doesn't have much pull with the rest of the facility, and there isn't a good way to contact him specifically otherwise I would.

 

[greenleaf]

Ok - I hope you'll keep trying, it's very good to get these things dealt with sooner rather than later, they are easier to cure early. I just did a search on "lyme disease specialist" and got lots of pages, but don't know where you live. Hang in there!