Mystery illness — pain in abdomen, back, chest, and head; no rash

Posted by everwing @everwing, Oct 6 1:27am

Hi all, I've been hunting through these incredibly helpful discussion groups for the past couple of days, looking for something that might match the symptoms my father (73 years old) has been experiencing for the past 1-2 months. Hoping this rings a bell for someone, as I haven't been able to find anything like it so far, and the doctors are baffled:

• pain that started in the abdomen but now also incorporates the head, chest, and back
• NOT a burning, stinging, or itching pain
• rather, the pain feels like an inflammation
• spans all areas of head/stomach/chest/back, i.e., not just on one side or in one area
• the pain roams around; sometimes it might be in the abdomen and head, sometimes more in the head, sometimes just in the back, etc…
• the areas hurt even when they're not being touched, but they hurt even more when touched
• no visible rash
• lying down and not moving eases the pain slightly, but not completely
• no fever
• no other gastric symptoms (e.g., nausea, vomiting)
• the pain increases or decreases in waves, but persists at a certain baseline. That is, my father hasn't had a pain-free day since this begun
• a similar "episode" of this pain occurred some months ago, but faded away on its own after a couple of weeks
• tests conducted so far include MRI, CT, X-ray, ultrasound, bloodwork, stool and urine samples; all have revealed nothing
• my father is currently taking Tramadol daily to manage the pain

Would welcome everyone's thoughts on the matter! We're off to see the gastroenterologist for a follow-up today, but so far everyone is completely baffled. Thanks in advance, and sending courage to everyone struggling with their health.

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Welcome to Connect @everwing. Your poor dad is going through the wringer with all of these symptoms. I’m wondering if he’s been tested for Lyme’s disease?

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@everwing your dad has a wonderful daughter! I’m sorry he is suffering so badly from this mysterious illness.
Whenever I hear about a mysterious disease that is undiagnosed I think of a rheumatologist. Rheumatologist are usually pretty savvy regarding rare diseases.
He has had lots of tests, and it may just take one doctor trained to look for the unusual, to find an answer.

Wishing both you and he blessings.

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Thank you both for your thoughts and kind words. A general update: the gastroenterologist advised my father to speak to someone in internal medicine, due to the fact that much of the pain now is located in his head. So we are now chasing that appointment!

Something else I ought to have mentioned: my father has been taking tocilizumbab (an immunosuppressant) for coming on 10 years now, for treatment of an (also mysterious and undiagnosed!) eye condition that was causing his eyesight to deteriorate rapidly. The tocilizumab has been successful in treating that condition, but it's strong stuff, and has given my father kidney stones previously. (We have confirmed that the abdominal part of the pain he is currently experiencing is definitely not a kidney stone!)

@loribmt

He has not been tested for Lyme's! However, he was given two courses of (different) antibiotics, neither of which helped. He also seems to lack a lot of the most common symptoms of Lyme's, such as fever, rash, and joint pain… Nevertheless, I'll add it to my list of possibilities!

@SusanEllen66

I think you're definitely onto something with a rheumatologist. Hopefully, the internal medicine folks, if we ever manage to get an appointment with them, will be able to shed some light on the matter. My thinking—completely uninformed and layperson as it is—is very much along the lines of inflammation or autoimmune; my sister has an autoimmune condition (lupus), which suggests to me there may be some genetic likelihood, and the best way my father can describe the pain he's experiencing is usually as an inflammation and tenderness. Which makes it even stranger that none of this is occurring in his joints, as you might expect, where he continues to experience no pain or stiffness whatsoever…

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@everwing

Thank you both for your thoughts and kind words. A general update: the gastroenterologist advised my father to speak to someone in internal medicine, due to the fact that much of the pain now is located in his head. So we are now chasing that appointment!

Something else I ought to have mentioned: my father has been taking tocilizumbab (an immunosuppressant) for coming on 10 years now, for treatment of an (also mysterious and undiagnosed!) eye condition that was causing his eyesight to deteriorate rapidly. The tocilizumab has been successful in treating that condition, but it's strong stuff, and has given my father kidney stones previously. (We have confirmed that the abdominal part of the pain he is currently experiencing is definitely not a kidney stone!)

@loribmt

He has not been tested for Lyme's! However, he was given two courses of (different) antibiotics, neither of which helped. He also seems to lack a lot of the most common symptoms of Lyme's, such as fever, rash, and joint pain… Nevertheless, I'll add it to my list of possibilities!

@SusanEllen66

I think you're definitely onto something with a rheumatologist. Hopefully, the internal medicine folks, if we ever manage to get an appointment with them, will be able to shed some light on the matter. My thinking—completely uninformed and layperson as it is—is very much along the lines of inflammation or autoimmune; my sister has an autoimmune condition (lupus), which suggests to me there may be some genetic likelihood, and the best way my father can describe the pain he's experiencing is usually as an inflammation and tenderness. Which makes it even stranger that none of this is occurring in his joints, as you might expect, where he continues to experience no pain or stiffness whatsoever…

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@everwing inflammation can be anywhere, not just joints.
The nerves under my scalp are inflamed right now because my neck and skull are misaligned. That inflammation gives me headaches, my scalp is sore to the touch, my cheek hurts, the skin across the top of my shoulders feels like I have a sunburn! That’s all from inflammation under my scalp…sounds crazy.

I really do think he needs to see a rheumatologist. Hopefully he can get an appointment quickly.

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Another update: my father is now waiting for an appointment with an internal medicine department, the soonest which is in January (ooof). He's feeling understandably demoralised at the prospect of living with this pain for another 3 months without answers. All his bloods continue to come back with only mild abnormalities, none of which the doctors seem to consider significant; while scans/etc. have shown nothing at all. The only real red flag we've got out of testing is an elevated PSA, which is being followed up with a urologist and an prostate MRI (in 2 weeks).

Hopefully we'll get some more news soon.

@SusanEllen66

I'm so sorry to hear about your current scalp pain! Is the neck/skull misalignment you're suffering from part of something bigger that you've been able to get diagnosed? I hope so.

We suggested a rhumatologist referral to my father's GP when we went back to see him, but he didn't seem to think it would lead anywhere, and instead suggested we wait and see what the internal medicine folks come back with. All well and good, if it weren't for the 3 month wait…!

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@everwing

Another update: my father is now waiting for an appointment with an internal medicine department, the soonest which is in January (ooof). He's feeling understandably demoralised at the prospect of living with this pain for another 3 months without answers. All his bloods continue to come back with only mild abnormalities, none of which the doctors seem to consider significant; while scans/etc. have shown nothing at all. The only real red flag we've got out of testing is an elevated PSA, which is being followed up with a urologist and an prostate MRI (in 2 weeks).

Hopefully we'll get some more news soon.

@SusanEllen66

I'm so sorry to hear about your current scalp pain! Is the neck/skull misalignment you're suffering from part of something bigger that you've been able to get diagnosed? I hope so.

We suggested a rhumatologist referral to my father's GP when we went back to see him, but he didn't seem to think it would lead anywhere, and instead suggested we wait and see what the internal medicine folks come back with. All well and good, if it weren't for the 3 month wait…!

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@everwing oh my goodness!
Does he need a referral?
Can you make an appointment for him directly with a rheumatologist or a urologist?
Internal medicine is is good, but the doctor will probably refer your dad to a specialist. That will be another wait…
Can he be put on a “cancellation list” for the internist and hopefully get in sooner?
I hate it when a person who is in pain, needs help asap, has to wait.

As for me, thanks for asking. I have pain throughout my entire body from osteoarthritis, fibromyalgia, polyneuropathy, occipital neuralgia and there’s very little I can do for it all. My body doesn’t respond well to any pain medication. I think it’s the reason I get crazy when I hear stories about people like your dad.
I live the best life I can but I’m frustrated because I can’t do the things I used to anymore.

I’m going to be 74 the end of this month. I’m really blessed!

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That's what I get as an allergic response to certain medications such as herbs ~ over the counter stuff.

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@SusanEllen66

My father lives in France, which is where we're pursuing this; and unfortunately yes, referrals here are very necessary. We are thinking of trying to see if we can get something with a rheumatologist in particular without one, though, since the internal medicine wait is so long! (And yes, at least he is on a cancellations list! Just have to keep fingers crossed, etc.)

I'm so sorry to hear about your multifarious woes 🙁 My sister has fibro alone which causes her a tremendous amount of pain, so I can't imagine how much you're dealing with with all those things going on at once! Still, I hope there are better days ahead, either in terms of pain management or just less pain in need of managing (or ideally: both!).

What you said here – "I live the best life I can but I’m frustrated because I can’t do the things I used to anymore." – really rings true for my dad, I think. He is a very active fellow whose primary hobby in caving (spelunking), and not being able to do that is really doing a number on his mental health.

@dcypherzzz

Oh, interesting! Thanks for sharing. I hadn't considered an allergic response… 🤔

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@everwing

@SusanEllen66

My father lives in France, which is where we're pursuing this; and unfortunately yes, referrals here are very necessary. We are thinking of trying to see if we can get something with a rheumatologist in particular without one, though, since the internal medicine wait is so long! (And yes, at least he is on a cancellations list! Just have to keep fingers crossed, etc.)

I'm so sorry to hear about your multifarious woes 🙁 My sister has fibro alone which causes her a tremendous amount of pain, so I can't imagine how much you're dealing with with all those things going on at once! Still, I hope there are better days ahead, either in terms of pain management or just less pain in need of managing (or ideally: both!).

What you said here – "I live the best life I can but I’m frustrated because I can’t do the things I used to anymore." – really rings true for my dad, I think. He is a very active fellow whose primary hobby in caving (spelunking), and not being able to do that is really doing a number on his mental health.

@dcypherzzz

Oh, interesting! Thanks for sharing. I hadn't considered an allergic response… 🤔

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@everwing
France, oh when you mentioned referrals I was hoping he was in the US where most people don’t need them
I have a friend in the Netherlands who is going through the same issues with referrals. Her GP is not very helpful and won’t give her a referral. She is in pain and needs help but…

I’m blessed to have a few specialists around me who are taking good care of me generally.
My next step is back to the neurologist who will hopefully test me again for possible dementia.

Blessings on you and your dad. 🌻

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@SusanEllen66

I didn't know they weren't as widespread in the U.S.! That's lucky, at least.

I'm so sorry to hear about your friend in the Netherlands. As with everything, it seems like health, too, is another area of life where it comes down to who, not what, you know… I hope your friend's GP gets a clue and finally gives her what she needs.

And fingers crossed for you and your neurologist! Here's hoping for healthier days for us all ahead 🙂

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