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Neurological sensation disorder/pain in chest

Messages
95
Hey everybody,

one of my main symptoms is that I have some kind of weird nerv pain, oversensivity feeling in the chest/stomach area. It gets worse when I read, listen to music or have conversations. It’s basically the bottleneck to activities. The only good thing is, that i don’t crash, because I don’t even get close to my energy level.

Does anyone else experience something similar? Or have an idea what could help? The only thing that helps are Benzos. But I don’t want to take them more then once a week.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
It sounds like it might be vaguely related to the neuropathic pain I suffered from, which was mainly in my front thigh muscles, but included the whole body when my ME was really severe. I assumed it was from ME affecting neuron function, biasing certain neurons to oversensitivity. LDN blocked that pain very well, and after a year or two I no longer suffered from that symptom. Acupuncture worked really well too the first time, but not the second time, and LDN was cheaper, so I didn't try acupuncture further. Maybe the needles triggered changes in some neurons, or maybe it was the relaxing in a dark room with tranquil music after having someone listen to my complaints the way conventional doctors didn't.

Have you noticed any effects on the symptoms from other brain-altering substances, including foods? Any correlation with time of day, or quality of sleep, or some other factors?
 

lenora

Senior Member
Messages
4,926
Hi Canned.

I do hope you're feeling better today. I'm wondering if your ribs are involved? Costocondritis is a symptom of ME but, to be honest, mine began years before I was diagnosed with ME. I have neurological conditions that cause a lot of problems and I've had surgery for both of them. After the first I was left with severe pain in my l. breast, under my l. arm and around to the back. It never went away & my neurologist gave me a diagnosis for (this one thing) of chostochonritis many years ago. I have a cream made by a compounding pharmacy and it helps a lot. Often, clothing is too much & it just isn't pleasant. By the way I also have congestive heart failure, and there's a difference between the pain of each.

On my l. side, especially if I cough, which I do regularly since I have chronic bronchitis, my ribs come out and it makes it hard for me to breathe, causes breast pain on my l. side (now moving to my r. also) & I have lots of numbness and sharpness in my abdomen. This hasn't improved in over 35 yrs. Mind you, I'm not a kid, I'm now 73. If you want more info, do contact me. I understand that your energy is limited & don't even know if this is close to what you suffer. I really wish you could feel better. Yours, Lenora
 
Messages
95
sorry for the late reply!

Thank you very much for your reply @lenora

LDN blocked that pain very well, and after a year or two I no longer suffered from that symptom.
I also got some relief from LDN. But it’s still on a very low level. I have never tried accupuncture.

Have you noticed any effects on the symptoms from other brain-altering substances, including foods? Any correlation with time of day, or quality of sleep, or some other factors?

What kind of foods or substances are you thinking off?
It correlates with the severity of my ME. That’s why I at first thought, that it’s normal to have it. Beside from that, I couldn’t make out any other correlations.

I'm wondering if your ribs are involved?
No I don’t think my rips are involved. It’s definitely deeper. More like in the stomach area.
 

lenora

Senior Member
Messages
4,926
Hi Canned....I've had this for many, many years and this one thing I'll say: It does seem to get better with time. In the beginning even breathing was a problem. Have you ever been told about "Tincture of Time".....it's true, a lot of things settle down with time. In a certain manner of speaking, it's its own medicine. I hope that's true of yours. It always hurts, if I think about...which I did just now.. And yes, mine starts in the abdomen, very deep and seems to work it's way up. A good Osteopath or even a PT who knows what they're doing may help with what is known as myofascial release. Look it up, it's far too detailed to go into here.

I do know how difficult it is to have both the heart and the ribs to worry about. Often the symptoms overlap, and that's extremely difficult. That's why I ended up with Congestive Heart Failure in April....and it wasn't much fun. Thank goodness it was right before the worst of COVID began. My feet are still swollen and I still have plenty of rib/chest pain. I'll wait it out, as the doctors, nurses, etc., have examined me and assured me that my lungs are clear (where does this very thick cough come from?) and so it goes. I've learned, all these years later, that getting upset doesn't help one thing. I have learned meditation, and proper breathing techniques (by all means learn the breathing...it's on youtube.com is quick and really does help). And then I have severe allergies overriding everything. Do you, out of interest? I now have 5 stents and yes, realize that I'm on a pretty slippery slope. That's fine, I've been fortunate and above all, I have learned and helped many others. These are the important things to me, apart from my family being the most important. I love talking to younger people, finding out what goes on in their minds today, and what their hopes and plans for the future are? In return, I hope they've learned something about me and what it's like to be in the older age range. Well, yesterday I was young; today I'm old. That's how fast it all goes and we're swept right along with the current. But I've learned, oh how I've learned and yes, this illness has played a huge part in it. Sometimes it isn't an enemy...think about it. Take good care, and I hope you feel better and feel better soon. Yours, Lenora.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
I have never tried accupuncture.

I only tried it because my doctor sent me to the mental health clinic, and they recommended that I try acupuncture, and I didn't want my medical record to say "uncooperative". I was really surprised that it worked. It didn't work the second time (slightly different points), so I don't know if it would work again. I'd only try acupuncture again if I had some sort of pain that I couldn't find any other effective treatment for and was desperate enough for relief.

What kind of foods or substances are you thinking off?

I didn't have anything specific in mind. Do regular pain relievers have any effect? Chocolate? Really, any chemical could have an effect; you just have to pay attention. I wouldn't have expected cumin to trigger temporary remission from ME or block PEM, but I noticed that an expected worsening of symptoms didn't occur, so I tested things I'd eaten the day before (curry) and found that cumin was the active ingredient. Further testing had it pretty much narrowed down to cuminaldehyde. The point is, if you pay attention and notice changes in your symptoms, you can try to figure out what caused it, and either identify a treatment (and possibly others to try) or something you need to avoid. It took me quite a while to realize that niacin was causing my suicidal moods, but once I did, I could avoid it.
 
Messages
95
I didn't have anything specific in mind. Do regular pain relievers have any effect? Chocolate? Really, any chemical could have an effect; you just have to pay attention. I wouldn't have expected cumin to trigger temporary remission from ME or block PEM, but I noticed that an expected worsening of symptoms didn't occur, so I tested things I'd eaten the day before (curry) and found that cumin was the active ingredient. Further testing had it pretty much narrowed down to cuminaldehyde. The point is, if you pay attention and notice changes in your symptoms, you can try to figure out what caused it, and either identify a treatment (and possibly others to try) or something you need to avoid. It too

Painkillers have no effect. I also tried gabapentin and Pregabalin, no effect ass well.

But I will start doing a food and symptoms diarie. Maybe that will give me a hint. It’s so hard to figure things out sometimes because food often seems to have a delayed effect
 
Messages
95
Could be the cause for this sensation the vagus nerve? It’s actually from the throat to the stomach. I even get nausea from reading too much.

I thought maybe Mestinon could help me. I read somewhere, that it inhibits the vagus nerv signaling.