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descibe the pain
#272108 08/25/15 01:09 PM
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elenef Offline OP
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hi all,

i had someone ask me yesterday what the pain i had felt like. and i found myself struggling with the right words to describe it.

the person prompted a description back to me like "when you overdo it the gym or yardwork, how you feel the next day?" ---which i said "yeah, that muscle soreness. which i also have some of due to tendon pain, but thats not how i woukd descibe it. "

so i am curious how any of you describe the physical pain. burning? aching? sharp?, etc.
for me alot of these words fit at various times to various symptoms, while other times they don't seem to decribe it enough.

would love to hear from you on this. thanks!


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Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

Re: descibe the pain
elenef #272110 08/25/15 10:17 PM
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for a non-spondy I'd probably describe it like toothache in multiple places in my bones. I think other folk understand how wearing toothache can be, so even though that's not a totally accurate description it at least gets across the kind of intensity of it.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: descibe the pain
elenef #272111 08/26/15 12:32 AM
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I think I can relate to the toothache analogy quite well.

Re: descibe the pain
elenef #272112 08/26/15 03:07 PM
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elenef Offline OP
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that is so interesting that two people chose toothache as a relatable description but i myself have never had a cavity or toothache! so i actually don't know what you mean! ha.

any others who can provide descriptions of what the pain feels like?


------
Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

Re: descibe the pain
elenef #272113 08/26/15 05:10 PM
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I am not sure how I would describe the pain. It does depend on what area I am talking about. My knee was more tight than painful. It was full of fluid so I hobbled around because it was because of the lack of flexion.
My hips and fingers are more of a constant ache. Almost like someone laid a 500 pound weight on my joint and left it there overnight. Very tender and sore.
My back is just intense pain, especially my SI joints. It's almost like an intense spasm. Especially in the morning or when I am inactive. My back gets very stiff and pain shoots through areas in my back when I make certain movements.
I think, overall, it is pretty hard to explain. Sometimes the pain in my back almost takes my breath away when I turn or twist and other times it just is a sore spot like I slept wrong but doesn't go away.

Re: descibe the pain
elenef #272306 09/16/15 06:49 PM
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elenef Offline OP
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bump. any others who can provide descriptions of what the pain feels like?


------
Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

Re: descibe the pain
elenef #272307 09/16/15 07:55 PM
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The pain in my SI joints can be different at different times. Sometimes it can be a stabbing burning pain in the lower back/upper buttock. A lot of the time it's a radiating ache like a gnawing pain down into the low buttock/hip area. That pain is the worst for me, it just never goes away, and tends to make me sick to my stomach. Then there is the pain in my neck,down into the middle of my back, down my arms from the cervical stenosis, not to mention the headaches. I also get pains in the muscles over my rib cage that feels like I'm being stabbed repeatedly. But by this time most people's eyes have glazed over and they just want to change the subject!


Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.
Re: descibe the pain
elenef #272312 09/18/15 12:23 AM
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The pain is hard to describe to people, isn't it? I find describing the fatigue even harder- people say to me "Oh yeah, I hate it when I'm really tired", and they don't appreciate that fatigue is distinctly different.

My spine pain- sometimes "stabbing", sometimes it's "crunchy", sometimes it's a dull ache (that is muscle pain I think, not direct spine, but they go hand in hand). My SI-joint pain feels like a dull ache most of the time. Sometimes the SI-joint pain can get so uncomfortable, especially on a plane or in a car, I have images of taking a melon baller and scooping out my SI-joints...

The heel pain feels like I'm walking on a sharp stone, when I have a flair up, every step is like walking on sharp stones...

Right now, it's unclear whether I have fibromyalgia or not- I'll be starting on Humira in October, and my new rheumatologist said that will help parse out my different pains. For my particular muscle pain, the way I describe that to people is it feels like when I've had the flu before- achey, creepy muscle feeling.

My shoulder and hip pain feels like someone is injecting a needle into the joint. I get this type of pain only rarely, but I often get that feeling of having a needle injected into my deltoids and my quadriceps. I think this is probably tendon related, although don't know.

My hamstring/buttock pain feels like I have walked too many hills, so it's more of a soreness I guess. Edited to add: I was out walking tonight and realize the hamstring pain feels like when I pulled a hamstring muscle in high school...

Sometimes my whole body hurts during my worst flair ups- usually those days, I tell people it feels like I've either been beaten up or in a car accident, although I've never had either of those happen to me, so I'm not quite sure if the analogy is quite right.

When I was younger and used to work out hard and had muscle soreness the next day, it feel good to me, now when I have muscle or joint pain, it feels horrible...

Last edited by Sheep1; 09/18/15 04:22 AM.

48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009
Re: descibe the pain
elenef #272315 09/18/15 12:02 PM
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I get a pulling sensation along the right side of lower spine and a almost like Charlie horse in right hamstring. Like I have worked out hard. A lot of back shoulder pain from trying to keep good posture ( I think ) I'm now having my torticolis pain in my neck with headache but not sure if this is from sleeping on stomach to keep spine straight....😕


Hla b27 positive 9/2/15
Uveitis since 2011
Upcoming rheumotologist appt. 10/5/15
Aches and pains for years
47 yrs. Female
Re: descibe the pain
elenef #272318 09/18/15 12:52 PM
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elenef Offline OP
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sometimes i avoid saying 'dull ache' because i feel like it minimizes the actual amount pain i am in. but it does flucuate so sometimes 'dull' is accurate. but most of the time it just isn't sufficient. that's usually when i chose to say 'intense ache' which still sounds awkward to me, but at least starts the get at how bad the pain can really be.

of course with all of this, i care less about what other people think about the words i chose to describe it because i have only ever had one person (a friend) ask besides my Rheumy. i was more curious how other spondys describe their pain so i had a point of comparison to my own pain. although i know we all experience our disease differently.

lately i have been having very sharp pain that is constant in my thoracic spine area. and the pain in my SI, hips, knees, ankles and feet have been intense aches. so much so that it's been really affecting my walking and sleep (more than usual that is).

i also have a ton of muscle pain. and i know what it feels like to work out too hard and what the muscle soreness feels like the next day---but the spondy related muscle pain is not the same at all for me. its a tightness that doesn't seem to subside no matter how many stretches etc i do. sometimes its a combo of tightness and burning---again constantly. which i feel also matters in the description. because constant muscle spasm or pain leads to more feelings of fatigue. so the flu analogy is a pretty good one.

ah yes, the fatigue. i agree this might be the hardest. as soon as you say tired or fatigue the other person says "oh i know i am so tired too!" and then i just stop because i feel like they just won't get it. again the flu analogy is a good one here too.

any other descriptions out there?


------
Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

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