It all started with what the doctor thought was shingles (without the rash) on the right hand side of my torso, 6 months ago. Very severe nerve pain, feels like blistering sunburn. Quite quickly it spread to the whole of my abdomen, chest, back, buttocks, and now it’s spread down my legs (feels like my skin has been peeled off) and is making its way down my arms. I can’t bear to be touched, even by clothes, and even the wind hurts. One neurologist said it was neuropathy from diabetes, but the endocrinologist said that neuropathy doesn’t present like this in the body (it’s usually peripheral). I do have peripheral neuropathy in my hands and feet. My feet are about 90% numb, and my hands are burning like they are on fire. Nerve conduction tests revealed that the nerves in my hands and feet are compromised. Showering is difficult because of the numb feet and slipping and balance problems, and standing up, as well as trying to wash my hair, my arms being so weak.
I’ve had a brain MRI, full spine MRI’s, ultrasounds, and they all come back clear. I now have numbness spreading around my hips as well as very severe pain across my lower back. I also have hip pain which can’t be diagnosed. I can’t stand up for more than a few minutes, can’t walk at all, can’t lie down, because the pain is so bad, and sitting down hurts.
Also, stretching hurts, and when I yawn, my skin tingles, not in a pleasant way. It is also kind of itchy, but when I scratch it hurts like hell.
Now, the pain in my legs has overtaken everything else. It is too severe to write about, I couldn’t describe it. My entire legs hurt, but the worse is the front of my thighs, which are on fire. The skin feel stretched, and I can’t stand upright at all. All I can do is lie down and it seems like I am lying down and wasting my days away. My hands are hurting very much. I just wouldn’t have expected anything like this to happen to me. Things just seem to get worse and worse. How am I supposed to bear it all the time? I know I keep asking that, but how? I can no longer sleep because I have restless legs that are pretty much hurting all day, but at night are driving me mad. The Targin I’m taking for the hip pain is supposed to help with restless legs – but it aint. None of my medications seem to be helping. The Lyrica certainly isn’t. Its mad crazy.
Does anyone have any idea what I’ve got wrong with me and why I am not responding to any treatments?
Unfortunately we like you suffer chronic pain, we are here to help people verbally unfortunately we aren’t Drs (some of us have a better idea of what causes our pain than the Drs) .
You are going into the rabbit hole Alice but it isn’t wonderland so hop on the train and see all of the specialists you can and I’m sure if you persist you will find out what is wrong.
Then the journey to ease it will start
as long as I wake up alive I'm happy
Because it could be worse
It sounds like you're having a dreadful time of it. You're not going crazy; just about everyone who lives with chronic pain has this thought at one time or another. Have you asked your doctor to refer you to a pain specialist? There are some very good ones out there, who can guide you towards best practice for you and your circumstances. The input of a pain specialist can also help your GP. General practitioners have a lot on their plates and usually, only fifteen minutes to spend on each patient, so it can be difficult for them at times, especially when it comes to chronic pain. Although the mechanics of pain are well known and well documented, the reasons why a person suffers chronic pain can sometimes be difficult to pin down.