Phantom Limb Pain

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Phantom Limb Pain

Postby Baby-Hedgehog » Sun Jun 28, 2015 2:12 pm

An isolated, daily pain has spread and I wanted to know if it's a Fibro issue, and others are suffering or if it's down to the meds my doctor just gave me (tablets for fungal nail infection).

For many years, when trying to go to sleep I've had a 'discomfort' in my right knee - I can't describe it really as a not pain, it's just a completely horrible feeling (my son describes it as phantom limb pain) - to get rid of the 'horrid' I have to twist my knee into a painful, awkward position, hold it for a minute or so and then release - this normally fixes it (although I sometimes need to do it 3-4 times to make sure it goes).

Anyway, for the last 2 nights it's got a lot worse. It's not just my right knee - it's now my whole leg and my whole arm...... despite taking my usual meds (which include pain killers and sleeping tablets) I just cannot get through the 'horrid' to go to sleep.

I've been tossing and turning - pinching, hitting and twisting my limbs to try to get past it - last night was so bad I even contemplated breaking my arm to stop it - I finally got to sleep at 4am..... and the 'horrid' has now continued through the day and I keep pinching and slapping myself to make it go (not really working) - have to hold my arm close to my body to do anything as there's no strength. This, and the lack of sleep is making me despair......not sure what to do

I've stopped taking the fungal nail tablets, just in case they are the cause - but as it's an issue I've already had (albeit a lesser version) I did wonder if any of you have suffered too, and if there's anything you can suggest which might help.

Thanks everyone xxx
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Re: Phantom Limb Pain

Postby Paisleyjane » Mon Jun 29, 2015 5:04 pm

Oh goodness it sounds awful. I can empathise with you but not offer any concrete help sorry. The pain issue is horrendous isn't it?
I don't know what to do with myself today as well, all because of pain.
I have gone to my extra patch too this weekend to try n get relief.
Do you have a pain specialist you can see?
Have you tried any alternative therapies, might acupuncture help?
Sorry I can't help more, but you have my prayers and a gentle hug.
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Re: Phantom Limb Pain

Postby Baby-Hedgehog » Mon Jun 29, 2015 5:07 pm

Thank you xx
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Re: Phantom Limb Pain

Postby TheHud » Mon Jun 29, 2015 6:05 pm

Sorry to hear this :( I have pain that has spread outwards. It means the only way to sleep is on my right side with my left arm extended slightly back down the side of my body. i use a small, soft cot pillow to keep my head angle straight and take a bucketful of pain killers and pregab ;) I also put a rolled damp flannel in the crook of my neck to stop the arm edging up towards my face.

I have had this for 2 years and it lasts anywhere from 3 -12 weeks. i am terrified of it firing off again it is that bad so always keep that position. It has left my left are very weak and my left hand pretty useless. can't lift etc. i did go the docs 2 years ago when this outbreak started, got codeine. Then by jan could not cope anymore so got pregab and it has helped.

Did you get a buzzing between your shoulder blades and down your leg, around your ribs before the big spread started?

I think its arthritic and Fibro picks up on the problem, maybe a trapped nerve, and just goes on the rampage. I am dealing with my hands this week at the specialist, after I want the neck looked at because its not been xray'd or anything for 11 years.

Good luck but ask for it to be checked out.

We daft Fibro people just think hey, Fibro, same if you have inflammatory arthritis or any disease. If what happens to us happened to everyone else without pain they would be at A and E.
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Re: Phantom Limb Pain

Postby Baby-Hedgehog » Tue Jun 30, 2015 10:51 am

Hi TheHud

So sorry you suffer with it too - I don't know about you, but I wouldn't wish fibro on my worst enemy - I've had 3 friends in the last 2 months who seem to have it (they're waiting on confirmation), the number of new cases are frightening.

I don't get the tingling pain you mentioned - for me it just sweeps across my limb/s - like a storm cloud slowing blocking out the sun - I can feel the sensation changing to a 'nothing' pain.

Someone, on the facebook version of this post, has said she gets her husband to lie on the offending limb - which helps.... problem is, if I get it in the middle of the night I really don't want to wake hubby up.... perhaps I should get a corby trouser press instead (obviously without a plug) :lol:

I'm no good with Pregabalin - I'm hypersensitive to meds, and whilst it starting out ok, by the time I'd got to a dose that controlled the pain I couldn't function at all cognitively - and stringing more that 2 words together became impossible.

I've been coating my arm and leg in ibuprofen gel at bed time (not without issues - as a teenage duodenal ulcer means anti-inflammatories trigger horrible digestive issues) - but the gel seems to work, or at least it allows me to get to sleep (along with the normal cocktail on pain killer and sleeping tablets).

Hope your flare up stays away xxx
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