sharp sporadic pains?

[dbab]

Hey everyone!  I have a symptom that is weird.  Even my rheumy gave me a puzzled look.

About 4 times a week, around 4:00 or 4:30 in the AM (a little bit before I need to get up for work), I wake up in pain.  Its not pain in a certain location and its not really in my joints.  It's more like sudden sharp pains that "travel" around my body in no particular pattern.  It's like shocks, but not shock-like (does that make sense?)  The pain really feels like it come from my bones and it really hurts or maybe just in the tissues.  It usually will last about an hour so I lay there or get up and move around as I can't seem to stay still during these episodes and not to disturb my husband.

Help please, I don't know how much more I can take 

[Chickpea]

Hi dbab

This sounds familiar to me, both your description of the pain and the timing.  I'm not a medic, and can't give medical advice, so my first thought is that you should consult a neurologist as well as your rheumy.  Neuropathic pain can range round your body at speed and at odd times; sometimes I feel as though it's in my bones and at other times in my muscles.  Quite a few of us here have neuropathic pain and have been described very low dose (usually 10 mg) amitriptyline/nortriptyline which seems to help.  Getting out of bed and moving around gently often helps; warm baths are very soothing too.

Are you on any pain meds?  Or other meds for SjS?

The 0400/0430 timing is also interesting.  Have you read up about sleep patterns ie when we have deep REM sleep and when it's more shallow sleep?  Maybe you could ask about a sleep study?  I've read that different organs are more or less active at different times of the day and night, particularly the liver.  This is the sort of thing an acupuncturist could tell you more about. 

Are you keeping a symptom diary?  Make sure you add your night time symptoms to the list and see if you can find a pattern over time.

Thinking of you - Chickpea

[dbab]

Thanks Chickpea,

I do have a symptom diary although I have to admit that I haven't been keeping it updated.  Neuropathy never dawned on me.  I do have neuropathy (diagnosed) but the feeling is really different, I don't have any tingling at all with this pain.  But as I type this, I know better to know things are never typical.

I don't take anything for my neuropathy.  I was given Lyrica before but had a bad reaction.  I did notice that my typical neuropathy symptoms have decreased with my regular medication.  I'm on 400 mg Plaquenil, 500 mg Lodine XL, 4 mg Prednisone (weaning down) and 10 mg weekly methotrexate.

A friend of mine who has fibromyalgia said that it sounds a lot like what she gets too but I would think that my rheumy would have mentioned that instead of looking at me weird.

I think I will take your advice and see a Neurologist.  I haven't seen one in ages and it may be a good idea anyway.

Thanks again 

[Pooh]

Hi dbab,
Good to see you.  I think Chickpea is right on the money with her advice.  I too would talk to my neurologist about these pains.  It does sound like neuropathy pain to me as I get similiar pain during the night also. 

I hope you find relief from this soon, it get really exhausting.

Hugs, Pooh