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

A general update, again: we finally got an appointment for a rheumatologist, and thanks to a last minute cancellation, it's tomorrow. His symptoms have been roving around a bit the past few days, and now include:

• stomach upset/diarrhea
• much more extreme fatigue (whereas before he was tired and resting a lot, now he needs several naps to get through the day)
• frequent coughing/sneezing
• pain localised now in the upper chest, beneath the armpits, and towards the front of his scalp/head (while the pain in his lower abdomen and back has diminished)

He's been taking 400mg ibuprofen the past few days to see if that would be any more effective than Tramadol, but it doesn't seem to have been so.

I'll post an update once after we've seen the rheumatologist!

@everwing yes, if you are referring to referrals, our healthcare system is not like those in other countries. There are many different types and plans we privately choose to pay for, or government subsidies for those with lower income. I am 74, and I get my healthcare through Medicare. That’s for seniors and it’s a government health plan however, we still pay for it.
There are so many choices when it comes to buying health insurance that it can make your head spin.
Referrals are a cost savings option. If you don’t mind having to get a referral, your insurance is usually cheaper.
I have never chosen to do that because I want to go where and when I feel like I’m going to get the best treatment.
I hope that I didn’t bore you with this. Many Americans are envious of people in other countries who have “free” healthcare. The cost of our prescriptions is criminal indeed. However, we have choices, and to me that is everything.

Blessings!

Possibly Long Covid

Another update, a bit belated.

The rheumatologist hummed and haaaed and, similarly, didn't really seem to think this was his domain. He did nevertheless order a panoply of tests: scintography (might be translating that wrong), more MRIs, more CAT-scans, blood tests, etc. Alas, there's a real shortage of MRI machines here, so getting two more MRI tests has pushed everything out a couple of months. TL;DR: after the tests, which should all get done by late Novemberish, my father has another appointment with the rheumatologist to talk through the results.

Meanwhile, the pain has moved around again...and actually (happily!!!!) faded from almost all areas. It took a couple of days. First the head pain went away in one half, then the whole head, then the stomach. For a bit it was just upper chest and underarms, and now it's almost exclusively under the arms, particularly the left one. Very strange! My father has continued taking 400 mg of ibuprofen, reducing his dose little by little; he started with 2-3 doses a day and is now on 200mg/day or nothing at all. He's also slowly resumed more strenuous physical activity (I think his mental health needed it!), without any issues. As I think I mentioned in my first post, he experienced something similar to this roaming, inexplicable pain a year or so ago, which faded of its own accord after a few weeks. We're now wondering if the same thing has happened (is happening—as the pain still persists under his arms) here, only taking several months rather than weeks. Which begs the question: will it reoccur? And for how long next time?

His energy levels also seem to have improved lately, although he is certainly not at pre-sickness levels, as has his appetite (slightly). He lost a lot of weight over the past few months, so hopefully he can start to put some of that back on (he was a skinny fellow to begin with!).

As always, I shall keep providing updates!

@SusanEllen66

I think the same is true here for some specialties—referrals can make things cheaper, but some specialists can be seen without them. It seems to be quite case by case however, and some clinics/etc. will just refuse to see you without a referral. I think it's probably more related to supply/demand and how overbooked things are here than anything else.

In an ideal world, we would all have fully flexible healthcare with choices AND heavy subsidies to make it affordable for everyone. I really do hope the healthcare system in American can move in that direction one day.

@cls1212

It's definitely a possibility! Thanks for sharing your thoughts.

Hi all. It's been a little while since my last post, so I just wanted to provide an update.

Since around 20 October, my father's various pains have been greatly diminished. Even better, as of a little under a week ago—so roughly 2 months since onset—all pain has stopped and my father is 100% pain-free again. We've completed the remaining tests various doctors have prescribed for us, and returned to hear their analyses, but no one was able to put their finger directly on the cause of his problems, and since it now seems to have magically resolved itself, we're happy to let things rest until they flair up again (hoping, of course, that they never do!).

In the meantime, here are some things we learned:
• my father's current treatment (tocilizumab) for his long-term, undiagnosed uveitis has the effect of dulling or flattening any signs of inflammation in blood tests. This accounts to some extent for why his blood tests have been so unhelpful in providing any signs as to what was going on, even when the pain was severe and seems to have been clearly inflammatory in nature. It could also explain why he has never run a fever at any point over the course of all this, despite frequent checking.
• my father does have signs of arthritis, some (but not all) of which may relate to his pain. In particular, he has/d signs of severe arthritis (per test results) in his neck/head area, which could have caused his head-related pain symptoms, but does very little to explain the stomach, pelvic, and chest pains. The rheumatologist we saw advised us to "keep an eye" on the situation (since the pain has gone now) and to see a kinesthesiologist as the first port of call if the pain returned.
• a doctor of internal medicine, one of the many specialists we have seen, ordered a PET scan for him which showed some kind of issue (forgive the vagueness—I barely understand the medical terms myself, let alone how best to translate them) in his upper shoulders/neck, which she thought could actually relate to his undiagnosed uveitis. Two ideas she mentioned were sarcoidosis, and, I believe, taking a biopsy of the temporal artery (suggestive, to me, of Giant cell arteritis). We're going to pursue this with my father's ophthalmologist (who is also a rheumatologist), with whom he has an appointment in early January.

I'll keep this thread updated with any further developments, but as always, curious to hear your thoughts. If nothing else, I hope this is useful to anyone else experiencing anything similar.

has your father ever has shingles with the rash? there is a singles without a rash - Zoster Sine Herpete - which i live with, also PHN; blood tests show specific antibodies since 2016. can cause of host of issues, and is usually un/misidentified as is so uncommon that doctors don't consider something they have never heard of. the virus travels everywhere we have nerves; had to ask google this year if can have shingles w/o rash as was symptomatic for shingles, but NO rash ever. took YES to PC, test ordered, what i found was confirmed. symptoms can come & go, anywhere. if you look up and does not fit, better. for some reason, Mayo online only references the rash variety, google will reveal all. sincerely hope is not the case, but since i keep getting diagnosed for the rare & uncommon, have learned to look everywhere. fortunately for me, my PC is always willing and eager to learn more, and i am no longer surprised. Hope answers can be found for your father, good you are advocating for him.

Hi @flamingal! Sorry for the late response. I really appreciate your sharing your thoughts.

He's never had shingles without a rash, to my knowledge, but I'll definitely make a note of this. It would certainly explain the pain travelling around so much, although to my knowledge shingles is a "burning" type of pain, and I understand that my father's pain felt quite different from that. I'm so sorry you've had such a spate of bad luck in the health department; I can only hope things settle for you soon and you're able to get some solid treatment and relief.

Happy approaching holidays. Thanks to everyone who's taken an interest or responded to this thread.

I have an update...unfortunately, not the best one, and perhaps only a partial answer. In essence, as of a few days ago, my father has been diagnosed with prostate cancer. While getting a whole range of tests for his mysterious pain, his GP noticed a high PSA score in a blood test and recommended he get a prostate MRI, which he did. These results were then passed onto his urologist, who sent him for a biopsy, the results of which, unfortunately, point to cancer.

The good news is that I understand his particular brand of prostate cancer is neither unusual, nor advanced: acenar adinocarcinoma, with a Gleason score of 7 (3+4), and a grade of 2. The bad news is that we both remain uncertain what relation, if any, this has to the pains he suffered. Again, my research suggests most prostate cancer shows no symptoms in early stages; certainly, happily, my father hasn't experienced any of the (primarily urinary) symptoms related to advanced cancer. That being the case, we're both struggling to understand how undiagnosed prostate cancer could be responsible for his multitude of mystery symptoms: abdominal pain, fatigue, and weight loss seem potentially related; head pain, chest pain, and underarm pain, less so. On the other hand, the idea that he might have something else going on simultaneously to prostate cancer is obviously worrying, especially as he looks at his treatment options and considers the best course of action.

As always, would love to hear people's thoughts, and wishing you all well.

yes, the external is terrible and burning; my ZSH (internal), can do it all - burn, stab, grab, sear - all depends on which nerve/where is being activated; can cause host of serious complications - I hope it is not this, but I had to google "no rash shingles" and take to my primary; even the i neurologist i saw had no clue (blank-face emoji if there is one) - and no repeat business. This can go wherever is a nerve - head to feet, all around skin & under, organs. Can stay dormant like the external, but once is in the internal nerves, can and will show up with no patterns, and without the rash, will never see it coming. At least my then-primary was interested; specialists where i knew more about me than they bothered/cared to learn - not at all. I put this out there as one of the too-many rare, uncommons that is not on anyone's radar - but is what we bring. Better to rule out then miss. Often the student must become the teacher. Wishing your father answers and relief.

@everwing, I appreciate your sharing the update. While you may not have complete answers, having a diagnosis sets you and your dad on a path of action to deal with the prostate cancer.

In prostate cancer, there can be a lot of treatment decision-making. There are several treatment options that are equally effective. That's the good news. Naturally, each treatment options comes with its own set of side effects, so the treatment decision often relies on the patient preference, quality of life choices and other health conditions.

Luckily, Connect has a very helpful and active support group talking about prostate cancer. I encourage you and your dad to follow the group, search the discussions, and ask questions. Here's the link:
- Prostate Cancer Support Group https://connect.mayoclinic.org/group/prostate-cancer/