Tired of THIS PAIN !

[Welsey]

Please someone help me !!!! I have so much pain with my PN I can't stand it ! Another time I had to say that I was just in too much pain to go anywhere . I'm sure people think I'm making this up ! That all this pain is in my HEAD ! Well, it's not ! How am I going to live like this the rest of my LIFE ??? This is NOT LIVING !

[DonnaG]

Hi Welsey, Hang in there, I know PN can be very painfull, I have been suffering for over 7 years now. Some of the things that help me with major flare ups like yours is of course breathing, and I soak my feet in epsom salts. I find that does help. What med's are you on . is there anything you can take to help calm things down. I have a compounding cream that my pain Dr RX'd for me. It is a compound of 2% Amitriptyline, 2%Gabapentin 1% Ketamine in a PLO Cream. It really helps for those times when things get out of control. Also for me , it seems that what I eat can cause a fare up. Like Potatoes, tomatoes, and no alcohol, even 1 glass of white wine can start things. My PN is Hereditary Small Fiber Neuropathy.

I know I am sure there are people out there that think this is all in my head , just how bad the pain can get. The burning, stinging, shock's shooting into toes, feels like your walking on rocks or shards of glass, the numbness, the loss of balance, so many different aspects to this Neuropathy. It is easy to get depressed and down. Supports groups keep me going, I am a member of a few of them on FB. It really helps to talk with people who don't think you are crazy, and know what you are going thorough. Hope this helps, wishing you a less painfull day than you are having.

Donna

[Welsey in reply to DonnaG]

Donna , thank you so very much for the comment . I'm so glad they're are other people out there that understand what we go through . Yes, I don't understand why somedays I don't have too much pain and other days it's unbearable .

I will take your advice ! Videos of calming sounds may be helpful to us also .

I just can't thank you enough ,,, thank you Donna

[bobdog in reply to DonnaG]

ive suffered for years i then started to look at my diet and food intake and discovered that i was allergic to anything that consisted of white spirit vinegar, garlic or anything really spicy , I now look at what ingredients are in the food especially micro wave fast foods,if i keep clear of the above named i am not woken by the hot feet and stabbing pains that so destroy my sleep . my attacks usually came between 3 and 5 in the morning i obtained some relief by applying a muscle rub cream although this took approx 20 mins to work.you must keep a daily record of what you eat, i found tomato ketchup , mayonnaise etc were among my worst choices, so now i steer clear of them. this works for me i'm happy to say, an initial diagnosis by my doc said i had verrucas!!! . but i can still enjoy eggs fish and chips with peas and surprise MALT vinegar, but as suggested keep a daily record of your intake, b est of look BOBDOG

[Welsey in reply to bobdog]

Thank you so much ! I will look into that !

[BethanyM]

I've had small fiber neuropathy for 25 years. On the highest dose of Gabapentin 3600 mg. It works most of the time. If I didn't have this med I would go out of my mind. I fall alot also. So now I'm in a motorized wheelchair. Not how I thought my life would be. Please see your doc for some medication. You can't go on like that. All my best.

[Welsey in reply to BethanyM]

I very kind of you ,,,yes I must see if I can take more . I hope you're ok,,, I understand what you go through , I'm so very sorry .

[8052_]

Me too ! I feel for you its very distressing.

[turkishdelight]

in july this year i was diagnosed with pn omg the pain is unbearable at times also im diabetic a real shock to my system,no two days are the same,i have problems sleeping cos of the pain,burning feeling,like walking on hot coals and shards of glass at times.i really sympathise with you ,hope you get it sorted.

violet

[Welsey in reply to turkishdelight]

Yes, it's horrible ! Yesterday a family member told me ,, that I don't try enough to get out .

[everlife]

The Pain can be terrible sometimes I take morphine tablets an GABAPENTON an I just try to keep going good luck.

[Welsey in reply to everlife]

Thank you . It really sucks . I hope the pain is not to bad for you .