Need help describing pain

kalmen

Member
Joined
Jul 22, 2024
Messages
13
Reason
DX CP
Diagnosis
01/2024
Country
AU
State
AC
Hello

One thing I became aware of, living in pain for the past 14 years, is that I didn't realize I was in pain, and I allowed others to gaslight me to thinking I was just lazy or unwilling to move (especially physio therapists). The two types of pain I'm looking for help is the generalised dull pain and acute pain. Does it have a name?

I don't know what the proper names for the pain is, but in summary it is:
1- General dull pain all around my body, but especially on my right side. This pain is not insanely bad, but forget social life, and work becomes a struggle. Fortunately, Panadol Osteo really helps but only enough manage the day without interacting with people. Does that have a name? Or just dull pain?
2- Chronic inflammation in my lower back, MRIs come back normal (wear and tear that comes with age), so far, we still don't know what's causing the inflammation and the markers are slightly elevated in the bloods. I think this one is clear.
3- General stiffness, that makes everything unpleasant, especially in my lower back, neck and face muscles, I'm guessing that is just muscle stiffness.
4- Acute pain, which is an outcome of the dull pain, inflammation and stiffness when the muscles I stressed (like sleeping on the wrong side). Does this have a different name?
5- Brain fog, which is self explanatory.

I guess I'm just looking for your thoughts, ideas, or shared experiences. I understand this is not to be taken as medical advice.

Cheers
 
Hello @kalmen ....I think that you have described the pain quite well in your post above. There aren't really any words that describe pain that you don't probably already know. It's hard to describe it to others, I know. That is something every one of us struggles with at one time or another.

But honestly ---and this is only my opinion --- I don't think having more names for the pain, if there were more names, or better names if there were better names, would help all that much. Because people who have not experienced what fibromyalgia is like will not ever be able to grasp what it is like for us. They just cannot - they don't have any reference for it.

I gave up some time ago on ever having anyone who has not experienced the symptoms of fibromyalgia or something similar, who has never had chronic pain, understand what my life is like. It's much easier on me if I don't expect anyone to understand it, and I only ask that they believe me when I tell them what it is like as best I can.
 
Thank you @sunkacola, It really helps to hear another perspective. This is also the time to see the types of people that surround you :), I really appreciate your time and sharing your experience, thank you!
 
Thank you @sunkacola, It really helps to hear another perspective. This is also the time to see the types of people that surround you :), I really appreciate your time and sharing your experience, thank you!
You are welcome, of course. That is what this forum is for.......for those of us who do understand what this is like to be able to tell each other about our experiences, offer support and advice, and tell each other what things have helped each of us to live with this condition.

The more we tell each other about what is going on for us, the less we need to feel all alone with this, and the more we may be able to help each other with ideas, perspectives, and even coping strategies or techniques. I know that I have learned a lot from the people here, and I hope the same will be true for you.
 
Absolutely it is, thank you. I hope to be able to make my own contribution to this forum.
 
I've been using an app called Manage My Pain to keep a pain diary daily. One of the prompts lists descriptions of pain from which you select what is applicable for you that day. It has 20 pain descriptors loaded and allows you to add your own descriptors as well. I just started using it, but I am very interested to see what kind of report, graph, etc. it might allow me to generate. Anyway, I'd check it out if you are having difficulty describing your pain.
 
I agree with a previous poster who said people who don't have Fibro can't really understand what it is like to have constant, grinding pain. When I describe the muscle pain to doctors, I usually say it feels like the Jolly Green Giant is standing on my shoulders digging his toes into them. I tell them the nerve pain and cold intolerance feels like I've been skinned alive, then set outside in a snow storm.
IME, nothing works if you are talking to a doctor who thinks Fibro is "just some hysterical females". Thankfully, there are less of those type of doctors than there were way back when I came down with this plague in 1986.
 
One person compared the pain in the whole body to the hum of an electric transformer. And I agree with him, I have had days when my whole body hummed.
 
I also have a pain I call vibration and it occurs in the middle of the night..... Hate it gives me such anxiety.
I also have cycles of heart palpitations and a pulling feeling on face and leg....Have had Fibro for over 20 years
cant tell what is real or what my mind is doing any more.
 
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the best way to describe pain that others can understand is by the 0 to 10 pain scale - this is totally induvial however if you describe the pain as 5 then the other person can associate that with their 5 which may be totally different but there is some understanding between the two of the pain felt. A descriptive term does not really work One can never feel the pain of another but one can understand that the other feels pain the only descriptive for pain are acute and chronic pain you are most likely describing chronic pain ie pain over a long period you also seems to be describing nerve pain - what medications do you take
 
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