Trying to make sense of my body!

Avacado

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Nov 16, 2022
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Hello all, new member here.

I am very confused about my condition at the moment. About 8 years ago I was very unwell with some kind of throat infection then developed post viral fatigue and eventually was told I had CFS. Main symptom was the pain in my throat and a flu like feeling. Have been learning to manage that for the last few years.

A couple of years ago some other things started to appear and I’ve ignored them as I just thought that’s the CFS. But lately things are getting worse and I can’t seem to manage my symptoms at the moment.

New things are IBS, burning pain/pressure in my chest, pain under my ribs that moves about, burning sensation in my back, ache in arms and legs, sore wrists, dizziness, headache. I still have the throat pain and fatigue from before.

Trying to work out if the CFS has just gone nuts or if it is possible that something else is going on. Dr keeps putting me on heart burn tablets which are doing nothing.

Would appreciate all and any thoughts.

Thanks
 

cookiebaker

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DX FIBRO
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Hello @Avacado and welcome.

First and foremost, are you working with your doctor to try to sort things? any testing being done, blood work, etc?
That is the first thing that should happen.
You should never "ignore" new symptoms, assuming they are related to CFS/Fibro/what ever - you know what happens when you assume things...... you should always get new symptoms checked out to make sure there is not something more sinister going on.

If the heartburn tablets are not helping, have you told your doctor that? Why would you keep taking a medicine that is not helping you? Tell your doctor they are doing no good, and you dont want any more.

IBS is a fairly common complaint for a lot of us, but that does not necessarily mean that there isn't something else going on. It needs to be properly investigated.. as do your other symptoms. Any of them could be related to CFS/Fibro, but they could also be related to other diseases/illnesses that are far more detrimental to you.
Be firm, not rude, and ask them to please investigate further. If they are not willing to do so, perhaps it is time to find a new doctor.

I hope you can find some answers soon.
 

Avacado

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Thank you! So helpful.

So I’ve had an ecg and a chest x-ray. I had a telephone call with a different dr this morning and he has arranged for bloods to be taken today. I told him I just want to know what I am dealing with and I feel like he heard me.

The other dr was recently qualified and he said I should take the anti acid tablets to rule it out. Which I did. Then he gave me another one. I have said twice I don’t think it’s that. Anyway I’ve taken them twice now so we can rule that out now at least.

I have another appointment in a week and I have much more of a sense of investigation about it now. Hopefully they can get me some answers. I feel like I am going a bit mad at the moment!
 

cookiebaker

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I had a telephone call with a different dr this morning and he has arranged for bloods to be taken today. I told him I just want to know what I am dealing with and I feel like he heard me.
That is a start, and hopefully will shed some light and give a direction for further investigation.
Please keep us posted on how things go.
 

sunkacola

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Seconding what cookiebaker says above. Get tested for everything that could possibly be causing the symptoms you have. By eliminating those you can narrow it down. Investigation is key here, and it seems to me that you have the right attitude and approach for it. Post here and let us help if we can. That's what we are here for.
 

Auriel

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Helli avocado, welcome to the forum ☕️ 🍰 , I used to ignore things too, assuming they were part of something else, ( I've stopped doing that now) , I know that some viruses can bring recurring symptoms (depending on what they are ), please don't think your going mad, you have a heath issue that needs investigating, I'm so glad the new dr is listening to you and your feeling more comfortable with it (ps I like your username)🍀🧚🏼‍♂️🍀
 

Avacado

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Thank you all!

If the recent blood test is clear what should I ask them to do next do you think? I’ve had an ecg and a chest x-ray plus the medication they tried for acid reflux. Not sure what else they should check.
 

JayCS

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If the recent blood test is clear what should I ask them to do next do you think? I’ve had an ecg and a chest x-ray plus the medication they tried for acid reflux. Not sure what else they should check.
Hi Avacado 👋

"Clear" for bloods is always relative: I'd ask them to go deeper on that. I assume they're getting inflammatory markers like CRP checked, but what about thyroid / hormone / (auto-/)immune markers? Also with all that burning going on: your nerves (neurologist). If there isn't enough reason for the chest and back pains on the x-ray, good gently physiotherapists like osteopaths, chiropractors, acupressurists might help with "soft diagnosing" and treating at the same time. Muscle problems like costochondritis might be part of it.
If the burning plus IBS are something like the immune system overreaction MCAS that'd be more complicated...
Could anything additional to the virus have triggered these new ones, some starting point (even if gradual)?

Aside from waiting for results I'd be looking for and preventing or alleviating triggers of the heartburn & IBS and local pains all along.
So finding out the food triggers to target the heartburn/reflux/GERD (hyperacidity or hypoacidity, so avoid all "strong" foods) & IBS (similar, plus certain foods groups like gluten, FODMAPs, if it were MCAS histamine etc.)
For the local pains as ever I'd go to youtube for the symptoms along with "exercises", "treatment" or similar.
Starting point might be to see how far you go with costochondritis and nerve burning exercises. This would treat and like with any physio support "soft diagnosing" yourself. They often give hints how to distinguish various pain and burning types, or just what comes up will give you pointers.
On youtube always remember to change "filters" above left to "videos" to not just get the 6 most relevant videos.

I'm wondering what exactly "throat pain" means, there are so many possibilities: glandular, obstruction feeling, something like a sore throat,... And when does it occur: is it triggered by eating, cold, movements, postures etc.? Is it constant, or does it wax and wane, or flare?
Does it seem to be more a "physical" problem or a "biological" one? I have many kinds of throat problems....

Dizziness and headache similarly have so many trigger possibilities that it's worth thinking about. I get nausea when moving around and headache from the burning 'histaminey' sinuses from my jab-triggered MCAS. Closing my eyes, esp. when moving my head helps my nausea & dizziness, whilst histamine minimization reduces sinus pain & headaches. All are helped by eating (histamine low).
(This nausea/dizziness and burning sinuses and skin is strongest in the 1-2 months directly after the jabs, the additional fatigue doesn't end.)
 
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cookiebaker

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If the recent blood test is clear what should I ask them to do next do you think?
all depends on what specifically is being tested for.
there are literally dozens of different blood tests that can be done.. you need to know what is being tested for, and what the results are.
there are tests for inflammation markers, autoimmune markers, lyme disease, vitamins/minerals, hormones - including thyroid, and a multitude of others.
the standard test is called a CBC, and checks hemoglobin, red & white cell counts, and a few other things, but is pretty generic... you need to get into more specific tests to rule out different things.
 

Auriel

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Good point cookie! 👏🏻 👏🏻 👏🏻 I ask now what they're testing for (and what results are, though they usually say anyway) 👍🏻👍🏻👍🏻
 

cookiebaker

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(and what results are, though they usually say anyway)
oh yeah, quite common to get the results - typically given out as "well, you blood work came back fine"
not what I want to hear - I want DETAILS, give me the numbers for whatever was tested for.. is it at the low or high end of "normal", or is it too low, or too high.. but that is me... and I do realize not everyone wants that kind of detail.

that is one thing i do like about the clinic i go to, I have access to test results thru my account on their website.. I can see results posted, many times before the doctor even gets a look at them (too busy with other things, or what have you)
Like today, I had a lab appointment early this morning.. (i had to call to find out what it was for and if I needed to fast or not, because it was not indicated - my GP wanted to recheck TSH, as last time it was slightly elevated) results are not posted yet, but I expect they will be sometime this afternoon.
 

Auriel

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Amen to that ⏫️ 👏🏻 🥳 🥇
 
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cookiebaker

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LOL, and the results are in... my TSH is even higher than it was in Sept...

I said more than 2 yrs ago I thought i was having some thyroid issues - but doc kept saying, no, no, everything is in normal ranges... :censored:
I now feel slightly vindicated... 2 tests in a row have come back above the "normal" range, and I am going to count the one that was just barely within that range.. the trend for the last 2.5 yrs has been upward.. Tell me there is nothing wrong now... :cautious:
 

Avacado

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Great thanks, I have no idea what they are testing for. I am in the UK, I am not sure what the blood test actually checks. I will ask.

It's a bit tiring all of this isn't it. Like trying to get out of a maze.
 

cookiebaker

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It's a bit tiring all of this isn't it. Like trying to get out of a maze.
yes, it can be like being stuck in a maze with no idea of which path to follow. This is why it is important to know what is being tested for and the results of those tests.. get the specifics.
Having that information is like using a string to tell you what path you have already been down.. making it easier to determine which path to take next.
 
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