notalgia paresthetica - any advice?

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My daughter has been diagnosed with notalgia paresthetica over her left shoulder blade although it moves around a bit over that upper left side of her back and sometimes extends down her arm. She doesn't have that persistent and 'unreachable itch', she just has constant background pain and severe pain when that area is touched. Even clothes irritate. She gets worse when she is hunching over school work for long periods and I am convinced that carrying her heavy school back pack contributes.

Does anyone have experience of this condition and, if so, what treatment did you have and what were the outcomes? The dermatologist said that there are numbing creams available and creams based on the chemicals found in chillies but they are not very effective. He said that most people manage it by doing stretches. But what stretches do you do? I can't find much info about appropriate stretches on the internet. I also found research saying that using a tens machine helps but the research papers do not state where to put the electrodes, just 'on the area', and the few images i found had the electrodes in different places.

Any help / advice much appreciated.

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15 Replies

  • Posted

    hi i just had to reply to your discussion because your daughters symptoms sound a lot like how mine started ease bear in mind i am not a doctor and im only advising you on my own experience.

    My symptoms started 4 years ago now in the same place your daughters has started After seeing 6 neurologists so many doctors the seventh neurologist diagnosed me with non length dependent Small Fibre neuropathy .

    Please look it up. I stress the non length dependent because small fibre neuropathy usually starts in the feet. The non length can start anywhere in the trunk arms legs even face.

    This is a very very rare condition so its only few specialists know about this.

    Thankfully after many tests i have been told there is no damage, just extreme burning pain and awful sensitivity.

    Please feel free to ask me any questions

    Take care x

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    • Posted

      Thank you for you reply. You know i was a bit dubious about the dermatologists diagnosis because the predominant symptom is intense itching. She has no itching at all. There is also often pigmentation of the affected area of skin. She has nothing visible on the skin at all. I think he based his diagnosis on the location of the area of pain. She says it feels kind of tingly and sore all the time but when touched it is hypersensitive and the touch is perceived as pain deep in the skin. The pain also lingers after the touch. More importantly, the pain is specific to the type of touch: there is no pain when the area is pressed, only if stroked, as if it is a particular type of nerve that is responding in this hyperactive / hypersenstive way. Was that the same for you?

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    • Posted

      I believe that the correct term for the pain caused by touch experienced by my daughter is mechanical allodynia. In fact when I researched her symptoms I realised she had dynamic allodynia - pain when the area is stroked/bushed (as opposed to static mechanical allodynia which is pain due to pressure).

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    • Posted

      Hi the more you are saying, the more i urge you to look up NON LENGTH dependendant Small Fibre Neuropathy. The symptoms are classic With this you have no visable signs at all. I Would say the only difference i have is the itch, but this is a variable condition

      You need to see a neurologist and i have to stress one that is an expert on the peripihal nervous system. Although i hate taking them there is medication if she is diagnosed with this condition she can take. There is also something called Lidocaine patches, which stick straight on the skin. These are brilliant for releving the pain in that area. Which country ate you in?

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    • Posted

      I am in the UK. I did look up non length dependent small fibre neuropathy - I note that it is associated with other conditions such as Sjögren syndrome (whatever that is!). Is yours associated with something else or is it idiopathic? Why do you hate taking the medication? Doe it have nasty side effects?

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    • Posted

      Sorry for all the questions, just hungry for info. My daughter finds that acupuncture helps. After an acu session she is no longer in pain, but it returns as soon as she starts school.

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    • Posted

      HI i am work at the moment so cant relply with much info I am too in uk . If you can work out how to give me yr tel no i can answer all the questions you want . Sorry cant work out how to do it 😦 I Have 4 yrs experience on this .

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    • Posted

      Hi 0208mad

      I first started experiencing this when I was 23, on and off for 18 years. Left side. It feels like you want to cut open that part and rub the inside. Sometimes I have that heavy dull pain that feels like its in the middle of the breast and the spine at T3. Weird feelings. The symptoms are on and off, sometimes off for months but recently its become like an every night thing where my husband has to use a knuckle press or rub around that particular spot at T3 , shoulder blades, scapula. Relieving feeling that makes you want to sleep. Rubbing against posts and table/bench corners relieves a bit of pressure but a good massage around that area is gold. I live in a country where we do not have specialist neurologists so quite tough here when it comes to looking for answers.

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  • Posted

    I have struggled with NP for about 2 years. My symptoms are intense and annoying itching under my right scapula.

    I've finally found some relief below:

    1. Lavender essential oil, diluted 50% with Sweet Almond Oil. Rubbed with a cotton pad at the base of the neck (C3-4 spine), and also the lower lumbar area. It can also be rubbed over the itchy area. This can last several hours or more.

    2. Salicylic Acid pads (such as Clearasil/Stridex acne medicine) - these are anti-inflammatory in nature, and have also helped to reduce the itching. Rub on areas as noted above.

    3. Vitamin B complex has been the MOST promising, particularly a potent B-100 compound. Taken in the morning consistently (and perhaps every 12 hours), I've used this alone with NO other treatment and it is working very well for me. Vitamin B has a calming effect on the nervous system, and reduces the effects of stress. I've tried a number of other things, and these have worked the best.

    Hoping this helps 😃

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  • Posted

    I've got similar burning pain which is worse when I lean back on a chair or lie down on my back

    I was also told by a dermatologist that it could be notalgia parasthetica.

    Did you find anything that helps to relieve this condition

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  • Posted

    Hi Suki_girl,

    It's been a while since you posted this but how is your daughter doing now?

    I started experiencing NP around the same age as your daughter also when doing school work.

    I'm 34 now and it's still problematic although daily stretching (of the chest muscles) plus back strengthening (rows) helps keep it at bay. I seem prone to thoracic kyphosis so I have to exercise and stretch daily to maintain adequate posture. I have loss of sensation in the NP area, get crawling sensations, aching and burning which instantly improves when I straighten up.

    Around age 23 I started getting symptoms on the right side too although the right side has barely any numbness.

    i've also had issues with other sensory nerves such as meralgia paresthetica, saphenous neuritis and occasional zaps in my hands when gripping stuff. The symptoms typically seem to come and go but sooner or later return if I neglect my exercises.

    I recently read with some concern that early onset NP is linked with multiple endocrine neoplasia type 2A. It might be worth getting your daughter screened for this and I might push to try get screened for it. I will also look up the non length small fiber neuropathy the other poster spoke of.

    All the best

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    • Posted

      Hi, wow, it has been a while. Unfortunately my daughter still has this issue. Still in the same area - an elongated patch across her scapula but it does move around, sometimes nearer to her spine, sometimesnearest to her armpit. Sometimes the pain is severe enough to keep her awake and other times it is barely noticable. It is worse when she is studying (she is now in her 3rd year of university), I think due to the hunching over books and computer. It is also worse when she gets hot. We still don't know what it is. She had physiotherapy but that seems to make it worse. Acupuncture elimated the pain but only short term. About a year ago we asked for her to be referred to a neurologist who thought that there could be a kink or pinch in the nerve somewhere and ordered MRI scans of the neck, upper back, mid back and shoulder. The scans showed nothing abnormal and the neurologist told her that she couldn't help her. So we still don't have a diagnosis. She has now been referred to a pain clinic.

      It is interesting you mention other nerve issues. My daughter sometimes gets the same over sensitivity down her arm, a burning sensation in her hands, and other zaps and shooting pains.

      What are the exercises that you do? As yet, my daughter hasn't found any that help.

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    • Edited

      Hi there,

      Sorry to hear she's still having issues! It would've been prudent of the Neurologist to do some nerve conduction studies and possibly a brain MRI although it does sound like a peripheral nerve issue.

      These are the exercises I do. 3 X 10 reps on both daily, really hold the muscle contraction at the top of each rep.

      The stretch is just a normal "doorway pec stretch", 3 X 30 seconds daily minimum. Just be careful to really stick the chest out and up so that it stretches the chest muscles rather than the front of the shoulder.

      If hunching over books makes it worse, as it does mine, these might help as they'll strengthen the muscles which are being lengthened/ weakened by hunching and stretch out the ones being shortened thus improving posture and reducing traction on the nerves.

      I have been looking up a condition called HNPP, hereditary neuropathy with tendency to pressure palsy. It can occur sporadically. For myself at least it might explain why my sensory nerves seem easily injured and very slow or never to repair but tbh I don't have classic symptoms and it doesn't sound like your daughter does either. Luckily I've had no motor/ weakness issues and am very active but have the NP on both sides of my spine and a numb thigh. I've managed to self treat/ physio the other nerve issues I had (variously saphenous neuritis and anterior cutaneous nerve entrapment).

      All the best

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