Firstly, thank you to all the wonderful community members who took the time to view and respond to my first post. Your insight and experience is much appreciated.
Secondly, I wanted to provide an update. And I’ll commit to keeping this post a little less verbose.
As I alluded to in that first correspondence, earlier this month I had an upper endoscopy performed. In this case, the gastroenterologist was looking specifically for ulcers and signs of gastritis.
A few days following the procedure, I received word that no ulcers or erosion was seen and the biopsy taken during the EDG tested negative for Helicobacter pylori. In other words, there are no apparent issues with my stomach – which, on the one hand is good news but, on the other, provides no answers as it relates to my right upper quadrant pain.
Likewise, I also had an appointment with a doctor of physical medicine and rehabilitation – and this is where things got interesting.
This being my first visit to this particular doctor, I gave him the long version of my story. Afterwards, he reviewed my CT scan with me and reassured me that my liver and other internal organs appear to fine.
Then, he began asking me a series of questions. Some of them were pretty obvious and easy for me to answer e.g. “have you experienced a any trauma to my abdomen?, have you made any significant changes to your level of activity?”, etc. I responded “no” to all these questions. But the question that stood out to me was, “have you ever had shingles”? “Yes”, I replied. “I did have shingles on my right side in 2016”.
This piqued his interest. So, he showed me a dermatome chart and illustrated that my pain was consistent along my right T8 or T9 dermatome.
He further explained that the virus that causes shingles remains dormant in your body and can cause nerve pain, even years after you’ve recovered from the initial illness. And, while he did not use this specific diagnosis, I understand this could be called intercostal neuralgia and might explain some of my symptoms.
And, since there are no tests to confirm this diagnosis, he ultimately prescribed Gabapentin to see if it helps with my pain – I will keep you all posted on my progress on that front.
In the interim, is there anyone else here with a similar experience? In other words, has anyone been down this road before and found thoracic nerve pain to be a satisfactory answer?
Likewise, my gastroenterologists mentioned that, if nothing was found during the EGD, he may want to perform a HIDA scan. But now, after several normal labs, multiple tests, and no digestion issues; I’m starting to doubt that my liver or gallbladder are involved. Has anyone had experience in this area as well?
Thanks again to everyone. I look forward to hearing from you.
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SecondArrow
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Just had a quick read and found this but no doubt you've already researched the preliminary diagnosis. Very informative thanks & good luck moving forward.
The most common complication of shingles is postherpetic neuralgia (PHN). PHN causes severe pain even after the shingles rash clears.
.severe pain that continues for more than one to three months in the same place that the shingles occurred, even after the rash goes away.
I did read that the Intercostal pain is more specific to yours rather than centralised PHN.
Truthfully, the one thing that doesn't quite add up in reference to a PHN diagnosis is the area in which I feel pain.
In other words, when I had shingles a few years ago, it was limited to the right side of my face (specifically around my ear). It never manifested around my torso but, at the time, the doctor said that we caught it pretty early. So, while the rash started on my face, maybe it would have spread to my abdomen if I had waited too long – but who knows for sure?
Hoping to see some results with the new medication to either confirm the diagnosis or simply move on to the next hypothesis. In fact, if things don't improve, the doctor of physical medicine said he'd recommend an MRI.
I have no medical expertise at all but do know from my own experiences that Gabapentin is given to treat neuropathic pain (and other things but it was neuropathic pain in my case).
As far as I am aware there are no healing properties it just eases the pain until the pain is mended either by itself or intervention 🙁. So other than pain relief I don’t think it will help in understanding the cause of your pain - but you need, as always 🙂, to check with your doctor.
Whatever the outcome I am sure the Gabapentin will ease your pain - it works for me in the most part - but wish I was allowed more of it! 😑
Likewise, my layman's understanding is that Gabapentin is specific to “treating seizures and pain caused by shingles”.
In other words, I don't know if it's considered a “broad spectrum” drug or not but my hope is that it won't simply mask the pain if it's caused by something else and, by virtue of being targeted at neuropathic pain, will help rule out some of the other things that have been on my mind.
Ultimately, while I understand that there's no “cure” for this type of nerve pain, hopefully it will help in the diagnosis.
Just wondering, what neuropathic pain did you have that warranted a prescription for Gabapentin and what was your experience with the medication? If that's too personal, no worries.
It’s not too personal - that’s for sure 😀. Well started out as a response to pain - the supposed nerve mending pain, which turned out to be - after 6 months of discussion 😕 - an incisional hernia. Somewhat large. But in parallel with that was my back issuette - spinal stenosis - op 6 weeks ago which, I regret to say, has done nothing as far as I can tell 🙁. The question there is if I dare tell the surgeon that tomorrow morning at the first review since the op. He is very fierce!! Truly a bit scary lol.
Gabapentin for me has been excellent - no side effects at all - yippee 😀. As I said before I would get more down me (😀) if I was allowed because it wears off after about 4 hours....
I hope you find it helps you too,! Please let us know.
Well this is the first I've heard about your truly scary consultant situation - no one on this planet should encounter this sort of behaviour especially when your seeking there medical help. I'd like to kick his butt for making you and possibly others feel like this.
As hard as this may sound, you must be open and honest and speak up as there could be a practical reason as to why your pain's are no better after 6 weeks. ! It could be down to muscles knitting back together which take time to heal or some of your nerve endings have been affected which only your consultant can explain.
Hiding under the duvet as I would politely say is not going to ease your mind unless you speak up! Hopefully you'll have the support you need from Liz by yourside giving you the strength you need to speak up.
All the best for today Milipop, and as you know we shall all be awaiting your update!
I understand what you are saying but I am going to tread very carefully. I shall be honest but not emotive. If I get cross I know I will get myself into trouble 😀.
I am prone to getting cross with someone I don’t get on with at all, especially as he embarrassed me in front of other patients wanting to know why I hadn’t gone home yet after the op. Two days in a row 🙁. As if it was my fault lol. It was the Physios’ decision, not mine! Good ol’ Physios - bless them 👍.
Oh jesus Miles! Sorry to say this on open forum but your consultant needs to get........ sorry I cannot bring myself to say it but it begins with the letter L ...D to put a blummin smile or spring in his step! There are always reasons why some men or woman in fact are grumpy or horrid to others !
PM his name and I'll.......... sort him out as the Brummy Terror's ready for action !!!!
Maybe that's exactly what he needs! He's a school bully and needs knocking down a peg ! However your not well enough to be taking this sort of thing on but it does make me really angry !
Oh well, just finished all my ironing ! Eggs boiled for breakfast then its almost time to get ready for work at the hospital ! Then GD later , then a nice dark creepy walk alone to the local Christmas Church Service and another mince pie! Deks keeping his feet up ! 🙄🙄
Thanks for sharing, ThreeSmiles. I'm glad I wasn't getting to too personal.
Likewise, I'm glad you've find a little relief with the Gabapentin. I've only been taking it for about five days but have not noticed a big difference (but, on the bright side, I have not noticed any side effects either).
I hope your review with your surgeon went well.
Take care.
Hi SecondArrow
Your liver tests certainly sound reassuring.
We hope your neurology doctors can advise and monitor your pain moving forward.
I went to a session at a spa that used a foam roller to massage the muscles. Unfortunately the person demoing the class was inexperienced and failed to fully explain what could go wrong (i.e. too much pressure on the muscles). The next day, having bent over to pick something off the floor, I was unable to stand up and was locked in position. (Very scary btw) Quick visit to local hospital (I was on holiday) and they diagnosed muscular pain. It was in the region of my intercostal muscles (i.e. along the ribs) and was very painful all the time.
My Consultant explained that since you are continually breathing, you will find it difficult to recover quickly from this type of pain, due to the fact that the intercostal muscles are in constant use. However, he recommended using amitryptiline at night so that I would be able to sleep and give my body a break from constant turning over in bed etc.
A week after doing this, all pain had gone. Generally if you read about this type of pain, it can take upwards of 3 months to go away because of the constant use of these muscles. I realise you are being told that it is nerves, but because it is in the same area, then this may be why you are finding it difficult to get relief from the pain. Shingles follow nerves, which is possibly why even though it started in your face, it has now moved to another area of the body.
Don't know if this of any use, but I hope it does help to explain something. Good luck.
Well done on your achievments and secondly may your health improvements continue for many years ahead
It's my understanding that the shingles virus lodges in the root of a nerve and when that virus gets reactivated it inflames the nerve.
A nerve has many branches and that's why the rash spreads over an area.
I would be surprised though if shingles on the head or face caused pain down on the torso.
My wife had shingles around one side of the waist and the pain was all in that area.
My mother-in-law also had shingles around the waist (one side only) and she had it very badly , a ten inch band of rash and blisters from navel round to backbone and it took months for the rash to go and that area remained very sensitive for a couple of years after.
In both cases though the pain was only at and around the site of the rash.
Yes, as I mentioned in an earlier reply, it's the one thing that does not quite add up. When I had shingles, I never had a rash on the area in which I'm experiencing pain now. However, for better or worse and based on all my other tests, this is the leading theory.
I've only been taking the Gabapentin for a few days and, frankly, I have not noticed any improvements yet – but I understand that these things can take time.
Nonetheless, it's good to know that I should keep my expectations realistic.
Like I mentioned above, since nothing was found during the EGD, my gastroinrologist has suggested a HIDA scan.
Initially, I thought to myself “I'm finished with tests. I feel like, if something were wrong, they would have found it by now.” However, like a lot of other people on this forum, I admittedly still have a seed of doubt. In other words, despite my optimistic test results, I feel like my liver is not off the hook.
Truthfully, this is a little uncharacteristic of me because I am normally a pretty rational person and I truly want to believe that my liver and surrounding organs are healthy. In fact, I have found several people in this community in an extremely similar (almost identical) situation as me but I have been unable to connect with them directly to see if there's some further correlation – frankly, it's a little disappointing.
So, in an effort to put my mind at rest, I've agreed to have the HIDA scan. I'm also beginning to reconsider a FibroScan – just to quiet my fears for good. But I continue to tell myself to simply be patient – after all, impatience is what landed me in the ER just last month.
Likewise, my doctor of physical medicine and rehabilitation has since recommended an MRI of my spine to look for herniated discs (this is the alternative to the shingles theory I mentioned before). This prognosis seems promising to me because, as I've said many times before, I have no digestive issues and my pain appears to become aggravated in the evenings or while sitting in the car.
Thanks again to everyone who's responded so far. Take care.
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