Follow Up: Pain in Head and Neck

[MissNeverWell]

Hi all,

I couldn't find my original posts and reactions to it, but just wanted to let you know that I saw a walk-in clinic doctor to have a form filled out, and asked about the moderate to sometimes severe pain in the back of the left side of my head, particularly around the occipital lobe area, and behind my ear.

The doctor was impatient and outright questioned me why I don't have a family doctor. She wouldn't sign the ADP form because the hearing test was not attached, then I remembered the audiologist gave it to me separately and I forgot to bring documentation. However, after instructing me to move my head and neck in various positions, she stated that it was from tight muscles in the side of my neck. However, the type of pain is not the dull, aching, tightness type that I (perhaps inaccurately) associate with muscle stiffness, but more like nerve pain at various intersections that cause redness and indentation of my glasses/hearing aid into the skin. However, she did give a referral for a physiotherapist for me to search, so I could find one and check with them. I find they are sometimes better than the doctors.

Meanwhile, I still have trouble with my right eye, but without a g.p. for a referral, that will have to wait.

 

[SBee]

@MissNeverWell I find different pains hard to describe. The accepted terms drs seem promise don't seem to have appropriate words to describe things. so having an appt with an attitude like that makes me kind of crumble a bit and almost give in from trying to discuss anything.

Interesting you find physiotherapist more forthcoming - whilst drs were either testing me everything under the sun, or alternatively almost ignoring many of my symptoms, it was a physio who said sounds like fibromyalgia or rheumatoid arthritis to me. He was spot on on both conditions, yet it still took over another year for doctors formally to diagnose both...

I wish you well for the next round of appts you face

 

[MissNeverWell]

@MissNeverWell I find different pains hard to describe. The accepted terms drs seem promise don't seem to have appropriate words to describe things. so having an appt with an attitude like that makes me kind of crumble a bit and almost give in from trying to discuss anything.

Interesting you find physiotherapist more forthcoming - whilst drs were either testing me everything under the sun, or alternatively almost ignoring many of my symptoms, it was a physio who said sounds like fibromyalgia or rheumatoid arthritis to me. He was spot on on both conditions, yet it still took over another year for doctors formally to diagnose both...

I wish you well for the next round of appts you face

I also find it difficult to describe types of pain beyond adjectives like sharp, aching, etc. ; then when I go to the doctor, I am so anxious about the interaction that I forget to identify what type of pain, so the doctors take the path of least resistance, do a superficial evaluation based on their assumptions of what I tell them, and come up with the most common diagnosis.

 

[Auriel]

Hi @MissNeverWell , I'm so sorry you got treated that way, I still dont understand why dr's just can't ve nice, kind, and understanding, (I'm sure it should be the bare minimum of any health professional?) I'm genuinely considering changing my gp right now, the only one they keep putting me to see, (maybe the only one available at the time) kinda jokes around about my symptoms (not sure if it's just her personality or just trying to lighten the mood?) but I really don't want someone joking around when I'm not in the mood for that (I feel like I'm not being taken seriously) I have strange pain and odd sensation on the left side if my throat/thyroid/neck area, she tried explaining, over the phone (even without seeking me) it was probably a tense neck???? Asking me if the pain was inside or out! (Like how can you explain/answer that?) It's not a pain I've had before so I've nothing to compare it to? (I've only stayed with them cos I've been there for a few years and they know a lot about me, but I'm not sure it's wortth it anymore) ps miss never well, I hope that you do find a good health professional that can get all you health needs sorted out in a kind and helpful way

 

[MissNeverWell]

Hi @MissNeverWell , I'm so sorry you got treated that way, I still dont understand why dr's just can't ve nice, kind, and understanding, (I'm sure it should be the bare minimum of any health professional?) I'm genuinely considering changing my gp right now, the only one they keep putting me to see, (maybe the only one available at the time) kinda jokes around about my symptoms (not sure if it's just her personality or just trying to lighten the mood?) but I really don't want someone joking around when I'm not in the mood for that (I feel like I'm not being taken seriously) I have strange pain and odd sensation on the left side if my throat/thyroid/neck area, she tried explaining, over the phone (even without seeking me) it was probably a tense neck???? Asking me if the pain was inside or out! (Like how can you explain/answer that?) It's not a pain I've had before so I've nothing to compare it to? (I've only stayed with them cos I've been there for a few years and they know a lot about me, but I'm not sure it's wortth it anymore) ps miss never well, I hope that you do find a good health professional that can get all you health needs sorted out in a kind and helpful way

Many thanks for your empathetic and understanding response; it means a lot to me after such an experience. Some of the questions these doctors ask makes you shake your head, doesn't it? Hang on to that insight regarding the strange pain and sensation on the left side of your neck/thyroid area; I believe we have intuitive ability that doctors don't have; of course, part of that is we patients have an experiential understanding of the symptoms, whether or not we can verbalize/describe them accurately and effectively. I believe we have an additional type of intelligence based on this experiential knowledge that alerts us to similarities, patterns, areas of anatomy/physiology affected that diagnostic machines and questionnaires don't pick up on. Whether or not any pathology shows up, your experience is real, and your bodily intelligence says something is off here. For example, I have an ongoing similar problem with the left side of my throat due to gristle from a frozen dinner getting stuck in my throat, taking the hearsay advice of swallowing boiled water to get it down (which burnt the tissue, I believe), and a laryngoscopy that caused pain and injury to the esophagus (that was the guestimate after ending up in Emergency with severe chest pain). All these factors merged to prevent me from swallowing properly, especially on that side, ever since. Eventually, I was able to eat more raw foods, but it's hit and miss, and I've ended up with blood blisters from sour, sharp or hot foods that also block my swallowing. And yet, my mom was finally, after extensive testing and emergency room visits, with hyperactive thyroid, her doctor informed me that genetically, I had a higher risk of developing. Although my blood work shows normal thyroid functioning, there are subtle, nonclinical signs that something may be amiss - weight loss, hoarse voice/inability to sing, powdery skin, thinning/loss of hair. I'm glad it hasn't reached the clinical level yet, but that doesn't mean I dismiss these symptoms altogether.

 

[Auriel]

There's definatly something going on with your health @MissNeverWell,
it does sound like thyroid, (but there could be other causes ) and yes some questions they ask can make you feel like shaking your head and make you feel uncomfortable, I was sent by my gp to the A+e bout 2 months ago for stroke like symptoms, they brought a male student in the cubicle (without asking me) and he asked about my mental health (I looked him in the eye and asked why) he said we ask everyone (strange cos the guy in the cubical next to me wasn't asked?) They sent me a text message to do a survey, + I put everything i experienced so???, anyway wishing everyone well, please find something good to do/go/talk to (if you can, if you feel down/fed up, it helps me)

 

[MissNeverWell]

There's definatly something going on with your health @MissNeverWell,
it does sound like thyroid, (but there could be other causes ) and yes some questions they ask can make you feel like shaking your head and make you feel uncomfortable, I was sent by my gp to the A+e bout 2 months ago for stroke like symptoms, they brought a male student in the cubicle (without asking me) and he asked about my mental health (I looked him in the eye and asked why) he said we ask everyone (strange cos the guy in the cubical next to me wasn't asked?) They sent me a text message to do a survey, + I put everything i experienced so???, anyway wishing everyone well, please find something good to do/go/talk to (if you can, if you feel down/fed up, it helps me)

Yes, I now have tests completed that confirms that something is going on with my health. I'll try to be as succint as possible.

I had a second meet and greet with the doctor from that same building whom I initially rejected, and enlisted her as my new family physician, although some of the questions she asked makes me shake my head in wonder. For example, I showed her a mosquito bite (very reactive) while half quipping that I wouldn't be surprised if I have West Nile antibodies in my blood. She looked at it and replied, "So it's not a tick bite?" Well I don't know, what do you think, doctor, I felt like saying to her. Then on the same topic (Lyme Disease and West Nile virus) she remarked on the high incidence of ticks and related disease, and I mentioned an incident where I was exposed to mosquito bites and exhibited some of the symptoms during the same summer the virus came to light, and she asked, "Why, do they have West Nile Virus in Ontario?" Then, during the course of imparting information for a referral to an ear/nose/throat specialist so I could get my mastoid cavity cleaned out, she said, "What was that condition you have again" referring to the mastoid, which is a very commonly known part of the ear anatomy. Anyway, sorry I digress. I also told her I needed to get the growth on my leg seen to, so she will send me for an ultrasound in due course.

She ordered blood work (asked me my preference - fasting or non-fasting, to which I responded, which is better, to which she replied, "It doesn't matter, which would you prefer?" Okay, she's the gatekeeper, it's the specialists that lab technicians and specialists which will analyze the results. I went on Friday and got a call from the clinic on Saturday morning saying the doctor would like to make an appointment to go over the results of my blood work. Wow! That was fast. She booked it for a couple of weeks, so felt reassured it wasn't critical. After the phone call I logged into Life Labs and checked the results, and found that the liver enzyme alanine aminotransferese was high (although three points down from the last reading in 2022; but more alarmingly, a high albumin/creatinine ratio (which determines kidney functioning (despite the glomeruler filtration rate (how well the kidneys function) up to 90% compared to 75% a number of years ago). The magnesium level was also high. A Google search helped me understand some of the implications behind these results. When the albumin is high, the protein that is supposed to be in the blood leaks into the kidneys. The magnesium is also supposed to be in the blood/organs where it's needed. So that explains my loss of muscle mass/weight and maybe even my vision problems. It also may be the cause (as opposed to older age) for the low pulse rate especially upon waking in the morning (in the 50's).

What I was blaming on fibromyalgia may very well be liver and kidney malfunctioning. It doesn't make much sense because I've never drank or smoked; haven't eaten processed food in years; am nutrition conscious and exercise. The only thing I can think of (apart from genetics because mom had a massive kidney stone requiring removal of the organ and dad died of renal failure although he was in his late 90's and drank and smoked most of his life) is exposure to toxins that my liver and kidneys can't metabolize. I'm curious, has anyone here with fibromyalgia also have kidney or liver problems?

 

[Auriel]

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@MissNeverWell it sounds like they're doing quite thorough work, you're getting some answer's to what could be going on, (and that's always a good thing) the more answer's the more chance of soloutions, my liver enzymes started going crazy after a gallbladder removal a few years ago (one of my gp's said you don't really need one?,) I've not been feeling right since! (I was actually hospitalised and put on a drip for 2 weeks after it! So???, anyway, wishing you well ️️

 

[MissNeverWell]

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@MissNeverWell it sounds like they're doing quite thorough work, you're getting some answer's to what could be going on, (and that's always a good thing) the more answer's the more chance of soloutions, my liver enzymes started going crazy after a gallbladder removal a few years ago (one of my gp's said you don't really need one?,) I've not been feeling right since! (I was actually hospitalised and put on a drip for 2 weeks after it! So???, anyway, wishing you well ️️

Wow! Radical strategy for the gall bladder symptoms, and such an arrogant attitude - "you don't need one". These doctors just don't understand the concept of "I am the vine, you are the branches" to quote from the bible. Our body is an interconnected system; there is a function for each and every organ.

I understand that, with certain diseases/conditions, removal may be the most viable option to save the life, but I really wonder about Western medicine's objectification of body parts and the tendency to remove troublesome organs. It's like tonsils - I had a tonsilectomy when I was 4 or 5 years old - it was ether anaesthetic, horrible. Then when that didn't clear up my ear infections, the doctor recommended to mom that my adeoids be removed. To which mom asked if the doctor was sure that was the cause and would clear up the infections, and he said no, so mom said no way. Luckily, an ear specialist arrived in the town, and he immediately diagnosed a mastoid infection and hole in the eardrum; said I came close to meningitis or a tumour on the brain, so I had surgery to remove more anatomical structures - anvil/hammer/stirrup, part of the eardrum, mastoid. Now a days, I think they avoid routine tonsilectomies. I'm sure they have a more important role to play than what doctors realize.

 

[MissNeverWell]

There's definatly something going on with your health @MissNeverWell,
it does sound like thyroid, (but there could be other causes ) and yes some questions they ask can make you feel like shaking your head and make you feel uncomfortable, I was sent by my gp to the A+e bout 2 months ago for stroke like symptoms, they brought a male student in the cubicle (without asking me) and he asked about my mental health (I looked him in the eye and asked why) he said we ask everyone (strange cos the guy in the cubical next to me wasn't asked?) They sent me a text message to do a survey, + I put everything i experienced so???, anyway wishing everyone well, please find something good to do/go/talk to (if you can, if you feel down/fed up, it helps me)

I finally got the answer to the pain in my head and trouble with double/distorted vision (the vision problems came on a month or so ago, when I was walking to church, had my sunglasses on and somehow everything was somewhat distorted, hard to focus, and when I looked to the left at the trees, it became double, the street signs were blurry). This was also accompanied by sharp head pain in the occipital lobe area. Long story short, after being dismissed by my friend's doctor and the new gp I reluctantly took on in the same building, I went to Emergency a couple of weeks ago after a day out with my niece and her two children. She was driving me home, and a motorcycle passed her and was driving erratically. I looked at it when it came directly in front of us and it was double. A CAT scan revealed a mass, a brain tumour near the base of the skull that is compressing the brainstem. I got answers but I was totally floored; would never expect it in a million years. It has been a horrible time. So I can understand why they say never asssume every symptom is caused by fibromyalgia.

 

[Auriel]

@MissNeverWell PLEASE tell me it's one they can treat or it's benign

 

[MissNeverWell]

@MissNeverWell PLEASE tell me it's one they can treat or it's benign

They haven't been able to tell yet. I have to go through more tests. It's a horrible experience.

 

[Auriel]

Oh @MissNeverWell I'm so sorry I hope so much that its treatable (such a scary time for you and family,) sending lots of love