Author Topic: How can I tell 'what' hurts?  (Read 3315 times)

Head2Toe

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How can I tell 'what' hurts?
« on: December 04, 2014, 08:02:38 PM »
I had a few really good, relatively pain free weeks that I'm grateful for - but here we go again...

The pain associated with my 2013 flare was mostly related to my upper body:  Neck, jaw, shoulder, arm and ribs.

Monday morning I woke up just after 4:00 a.m. with an ache in my sacral area that radiated through my hips and all the way down to my feet.  It reminds me of the 'growing pains' I got in my legs when I was a kid.  I finally got up around 4:30, dropped at T3, and turned on my heating pad.  I did some gentle stretches in case my tendons were tight.  The pain ebbs and flows - but it does not appear to be going away. 

I've had this pain in the past, but it was never diagnosed as anything more than a need for arch support and/or stretching, and it disappeared as mysteriously as it appeared.  In my attempts to address it, I bought arch supports, took up yoga, Mountain Toaist Moving Meditation, and did other stretches prescribed by massage therapists and chiropractors - all to no avail.  The chronic deep aching lasted for many, many months (in fact I think it was years), and I'm terrified that's going to happen again :(

If it continues I will definitely make a trip to my doctor if ONLY to have it documented, but part of my challenge is that I cannot tell what actually hurts.  Tendons, ligaments, muscles, nerves, bones, or all of the above?  Does anyone have any advice that will help me nail down which component(s) of my lower body might be involved? 

Here's what I'm feeling:  My feet hurt like I've been standing in one spot for many hours.  There's an ache in my lower legs that seems to radiate from my shin bones.  (BTW - Is it normal for the shin bones to feel all bumpy down the front from knee to ankle?  I thought long bones were smooth but maybe I watch too much TV  :-\)  My knees ache - always both knees, and that aching moves around a bit.  And finally, there's a deep ache that radiates from deep in my hips, perhaps from the hip/leg socket?

Geez - I wish I had pain more attention in my Human Anatomy courses.  How can I figure out what's going on???

Female-57; Endometriosis (dx-1977); Cervical Osteoarthritis (dx 2014); Laryngeal Reflux (dx 2015); Seronegative & Negative Lip Biopsy

MAT51

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Re: How can I tell 'what' hurts?
« Reply #1 on: December 04, 2014, 11:29:08 PM »
Hi - sorry you have these symptoms after some time off. I have very similar symptoms to those you describe, I think of it as somewhere between toothache in my bones and neuralgia - and have had them on and off for ages. So far I've been diagnosed and treated for Hypothyroid (many years now), RA and recently was diagnosed with Small Fibre Neuropathy. I also have Sicca and dry nose and skin - seen as part of the RA to date. I'm having neurology investigations to try and find out what is causing the SFN soon but if nothing comes up then it will be regarded as idiopathic (idiotic and pathetic rolled into one?!). I have some Osteoarthritis too but I keep exercising in the way that you do and this seems to keep it at bay most of the time. My ESR fluctuates a lot and is currently at 55 - which I'm told just shows autoimmunity rather than active RA. No specific joint pain or swelling for ages now despite being off all RA meds for five months. I find Naproxen (NSAID) helps and also am trying Duloxetine for the nerve pain - so far no side effects on the lowest dose.

Hope this helps a bit although I have no answers. Mat
« Last Edit: December 04, 2014, 11:30:40 PM by MAT51 »
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Joe S.

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Re: How can I tell 'what' hurts?
« Reply #2 on: December 05, 2014, 04:11:00 AM »
First, I have learned that the fear that the pain will get worse will make it worse. When we are in pain we tend to hold our breath. So if we breath through our pain it will reduce faster.

For me, pain in my legs is often a lack of magnesium or potassium.  I try eating a banana to see if that helps. I do supplement daily with magnesium and often an ectra dose will help. If the pain is from lactic acid (I do not remember the other name), I find that movement will often help.

I ho] e you find relief from this pain.
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eija

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Re: How can I tell 'what' hurts?
« Reply #3 on: December 05, 2014, 05:52:09 PM »
part of my challenge is that I cannot tell what actually hurts.  Tendons, ligaments, muscles, nerves, bones, or all of the above?  Does anyone have any advice that will help me nail down which component(s) of my lower body might be involved?

I'm truly sorry you're hurting :( But your dilemma is familiar to me. In fact, I ranted about it after my last rheumy visit: After examining me he told me that my worse-than-ever-pain was because of my fibromyalgia, not Sjögren's. I didn't say it to him (maybe I should've...) but wondered afterwards, that if I can't tell if it's a muscle or tendon or whatever that's aching, how can he then? I mean, he bases his exam and dx (mostly) on what I tell him. If I don't know, how can I tell him, and if I can't tell him, how can he know?

Another crazy side of this darn stupid illness.

Sorry. I'm SO fed up with my life at the moment.

(Logging off to pop a sedative, go to bed and hopefully sleep)

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Head2Toe

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Re: How can I tell 'what' hurts?
« Reply #4 on: December 05, 2014, 06:26:30 PM »
Yikes Eija - I'm so sorry to hear you are having such a difficult time, but I understand the exhaustion and need to escape in the world of dreams :(  You have perfectly captured my frustration, except I can't even get a diagnosis for my doctor to point to.  I'm not sure if that's good news or bad news...

Joe - Thanks for your reminder to breathe.  Thankfully my fear of long term pain is not so great that it is overwhelming my ability to relax in the moment.  I understand the importance of relaxation - childbirth that taught me that more than 35 years ago;)  I don't make supplements on a regular basis as I find many of them negatively affect my digestive system.  Sadly, even bananas cause me grief these days - but I love them so think I'll live life on the edge this weekend and buy a couple!  Wow - that would be a simple solution if it works!

MAT51 - I'm sorry the experience is familiar to you too, but you made me LOL with your interpretation of idiopathic  ;D  It's interesting that your pain was attributed to thyroid, while Eija's was attributed to Fibro...  I find Naproxen doesn't touch the pain, but perhaps I should take it to reduce inflammation...  Even T3's only reduce the pain - they don't eliminate it, but perhaps the combination of Naproxen and T3's will provide some relief.


Female-57; Endometriosis (dx-1977); Cervical Osteoarthritis (dx 2014); Laryngeal Reflux (dx 2015); Seronegative & Negative Lip Biopsy

MAT51

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Re: How can I tell 'what' hurts?
« Reply #5 on: December 06, 2014, 12:27:41 AM »
Sorry to be a bit ignorant Head2toe but what are T3s? I only know T3 as something people sometimes take for hypothyroidism? I think the reason why the Naproxen is working so very well for the small fibre neuropathic pain is because this is inflammatory by nature. I hate the Cymbalta already after only a week but will stick it out at lowest dose possible for another week because I'm aware that living on a high dose of NSAID long term is probably not a good idea. I rarely take anti-inflammatories these days so I guess this makes them more effective when I do. Mat x
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Head2Toe

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Re: How can I tell 'what' hurts?
« Reply #6 on: December 06, 2014, 10:52:43 AM »
Sorry MAT51 - I wonder how many other people have wondered the same thing  :-[ 

T1 = Tylenol and 8 mg codeine, which can be purchased over the counter
T3 = Tylenol and 30 mg codeine, prescription strength
Both also contain caffeine
Female-57; Endometriosis (dx-1977); Cervical Osteoarthritis (dx 2014); Laryngeal Reflux (dx 2015); Seronegative & Negative Lip Biopsy

MAT51

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Re: How can I tell 'what' hurts?
« Reply #7 on: December 06, 2014, 10:58:54 AM »
We don't get Tylenol in the UK so no wonder I didn't know - thanks for explaining! Maybe similar to our Co-codimol (Paracetamol and Codeine combi)
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Jane

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Re: How can I tell 'what' hurts?
« Reply #8 on: December 08, 2014, 03:12:43 AM »
I had very similar pains and it turned out to be sciatica . I have been having Physio with stretching exercises and I can now sleep at night.

Scottietottie

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Re: How can I tell 'what' hurts?
« Reply #9 on: December 08, 2014, 11:23:03 AM »
I think Tylenol is Paracetamol.
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Scottietottie

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Re: How can I tell 'what' hurts?
« Reply #10 on: December 08, 2014, 11:34:06 AM »
More equivalents - Salagen = pilocarpine, Evoxac = Cevimeline, Restasis = Cyclosporine, Vicodin = Hydrocodone
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