Awaiting assessment with Rheumatology

PinkPJs

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Hi - I have all over body pains which seem to come and go, which is strange in itself. I've had blood test after blood test, especially as I have felt weak and tired. All tests have come back normal.

Along with the pains, which seem to circle, this is a diary of my days recently (over past 6 months):
Day 1 - pains in hands, elbows, knees, feet, neck - burning, stabbing or aching
Day 2 - no body pains but terrible face pain and headache
Day 3 - no pain but tired and shaky
Day 4 - pains in hands, elbows, knees, feet, neck - burning, stabbing or aching
Day 5 - pains in hands, elbows, knees, feet, neck - burning, stabbing or aching
Day 6 - no pain but tired and shaky
Day 7 - no pain but tired and shaky
Day 8 - no body pains but terrible face pain and headache
Day 9 - no body pains but terrible face pain and headache
Day 10 - no body pains but terrible face pain and headache
Day 11 - no pain but tired and shaky
Day 12 - pains in hands, elbows, knees, feet, neck - burning, stabbing or aching
Day 13 - pains in hands, elbows, knees, feet, neck - burning, stabbing or aching
Day 14 - feel like me only for a day or two

This is what keeps happening - does this resonate?

Many thanks for any answers

BW
 

JayCS

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Hi BW, and welcome! 👋

Hmm, I don't think I've ever heard of flares with this kind of definite cycle and order!
Could it be hormonal? - But I guess you've had all hormones checked in depth?
You're waiting for your rheumatologist appointment, many hormones won't be checked there tho.
Or related to days of the week, so maybe your activities?

Looking at the order, I can imagine how tiredness and shakiness usually comes up after pain. But I wonder how come Day 14 after the 2 days of pain (12 & 13) comes without the normal tiredness & shakiness you usually have: The closest I have (had) to that is the odd "cortisol" day, or rather a few hours. This used to entice me to act completely normally too much & long, which would again flare up new pain. My cortisol sometimes increases for a limited time after bad sleep, but also influenced by the circadian rhythm and serotonin and histamine levels.

I can imagine the "normal" day/s (14) leading to both pain type days, body, then head.
But why then body pain comes up again alone and then head pain, in that order...

So if you can't find cyclical triggers to explain it, my next bet would be to put things like your activities and amount of deep sleep in relation to the symptoms....
E.g. Chinese acupuncture often increases my cortisol, which entices me to use the extra energy, but I've learnt that I can only use that without backlash if I stay below the apparently higher limits and also keep my sleep to 9-9.5h. Plus any "strenuous" activities of >1h(-5h) can set me back from 20% energy down to 5-10% for 1-4 weeks.

Dissecting the exact symptoms and then searching singly for triggers and then treatments is what helps me most. Yours sound very familiar to me, apart from the cycle.
I wonder if you could call Day 1 types "body pain" and Day 2 types "head/brain pain"?
The face pain with headache remind me of trigeminal neuralgia, cluster headache and/or migraine.
Hands & feet, elbows & knees, neck: Sounds pretty symmetrical, so more "systemic" rather than localized, e.g. muscles, tendons, fasciae "all over", calling for treatment with supps as well as according exercises, first with a gentle expert, increasingly self-applied with youtube video ideas.

Is that any help?
 

PinkPJs

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Hi JayCS

I also have burning in my shoulder and upper back, right sided. I am once again feeling weak today with occasional stabs in my hands, mostly left sided and have the bad shoulder pain, right sided.
Hands & feet, elbows & knees, neck: Sounds pretty symmetrical, so more "systemic" rather than localized, e.g. muscles, tendons, fasciae "all over", calling for treatment with supps as well as according exercises, first with a gentle expert, increasingly self-applied with youtube video ideas.
I'm not sure what you mean by 'supps' - supports?

  • Would you say this sounds Fibro-like?

Thank you for taking the time to reply to me, it means a lot.

Pennie x
 

JayCS

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Hi again, Pennie... :)
I also have burning in my shoulder and upper back, right sided.
I'd suggest localized pains like this will improve more by focusing on PT-treatment of that part of the body, whilst more systemic pains (e.g. symmetrical) more by focusing on the whole body (like acupuncture) or supps...
I am once again feeling weak today with occasional stabs in my hands, mostly left sided and have the bad shoulder pain, right sided.
This description doesn't sound that symmetric any more, which doesn't support the connection between flare cycles and bodily regularity of the symptoms as much, but I'd still check all hormones.
I'm not sure what you mean by 'supps' - supports?
Sorry, supplements: vitamins, herbs, minerals, enzymes, amino acids...!
Would you say this sounds Fibro-like?
To me it is fibro-like enough to try general fibro-advice/treatments (like the advice post at the top of our general forum), cos: it's chronic, the pain is widespread and the additional symptoms seem severe enough (insomnia & fog too?).
But the cycles and face pain make it very likely that that's something else, so definitely something to get thoroughly checked - hormones & nerves - if they find nothing, then to get a 2nd opinion. If two diagnoses there would help you find a treatment that also decreases the pain & fatigue, then a possible third, the fibro diagnosis, would lose importance.
Believing symptoms are fibro only makes sense if it gets us somewhere significantly better.... 👐
 
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sunkacola

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Another thing that could be a trigger for what is happening would be external causes or food. Keep track of everything you eat and see if there is a correlation with your pain. Or, start eliminating things one at a time for a month (like eliminate gluten for a month, then if no improvement, eliminate dairy, etc.). The other thing is environmental. Have you been using or around paint, cleaning agents or chemicals, etc. anything at all that has a chemical base to it. Perfume, anything.

Allergies or sensitivities can develop later in life; you are not always born with them. So before you conclude something like fibromyalgia, testing these things our is a good idea. Also, as Jay says above, checking hormonal levels and other things is necessary in the process of discovering what is going on with you.
 

PinkPJs

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Hi and thanks for your comments. I have kept a diary of the things I eat and the things I do daily. So far, I have introduced more green leafy vegetables into my diet and already take supplements. The doctor has put me on oestrogen patches and in 5 months there seem to be no changes. I have had so many tests and all so far have come back normal. I have no external things in my property such as chemicals and am using the same products I have always used, so I can't imagine there would be any triggers there.

The only other thing I can think of is the trauma I had as a child and am now being treated for CPTSD. I also fell off my bike aged 10 and knocked my front teeth out. I wonder if the CPTSD and trauma to my face is now having an impact...?
 

JayCS

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I wonder if the CPTSD and trauma to my face is now having an impact...?
Hmm... a pretty slim connection - might just about explain the face pain, but not the cycles.
When I had my severest face pain I think it was caused by hiding my anxiety with my "face mask".
Generally I can imagine traumas and stress causing nerve problems ending in chronic pain like fibro, altho that's not a proven cause, however a moderately strong association, depending on the study.
This is an area of personal guessing - not much help, aside from getting us to do therapy....
the things I do daily
Well... so there are no clues, no similar regularity? "14" looks like days of the week / two weeks... ?
 

PinkPJs

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So, right now, I have stabbing in my right little toe and left fingers - horrible stabs that don't go away despite repositioning.
 

JayCS

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stabbing in my right little toe and left fingers - horrible stabs that don't go away despite repositioning.
"Not fibro-unlike", possibly nerves, so 🔜 neurologist; TENS, heat/cold, magnesium might reduce it... 👐
 

PinkPJs

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I've thought about buying a TENS machine but I've already spent so much trying to resolve this. I'll wait for Rheumatology appt and then see what happens there.
 
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