I love reading your posts ! My mom and dad helped raise my kids and when they were teenagers she asked if she could still come up to my house and piddle. There is only one house between mine and hers. Of course I said she could keep coming ! We have been very blessed to have her in our lives. She's a spit fire and she and my husband sometimes bandy words around but it's all good.

Have a good one everybody.

And yes.....my feet look fine but feel like you know what.

Debi

Hi Fixmeup11, No you are not being selfish to want to feel better & do things like any mom with her children & not have this restriction placed upon you, pain is extremely exhausting, I'm sure the Grandparents are glad to help out & you are doing your best for your little one.
I too would like my Dr to live with my pain & experience the day to day struggles, I have said I would never wish this pain on anyone but if it would give him some insight to living with pain & how to treat someone like us, like you I would gladly let him deal with it. Take Care & be gentle on yourself.

I was diagnosed with fibromyalgia in 1996. It was a fairly new diagnosis in the medical field then. No one in my circle of family and friends could believe or understand what I was going through. If I would have broken my leg it would have been visible and people understand that. It's the problems that people can't see that is the hardest for them to understand.

Yes, pain can make you think of nothing else. It folds you in on yourself. There were times I too was a crazy lady and just screamed. Stay on top of it if you can to where you can focus. I hope you find a quality of life where not every moment is ruined by pain. xxginnie

I suffer from severe back pain not related to an injury, and all diagnosis have proven incorrect. So have treatments (failed).

I can never focus. My productivity has plummeted in the last 6 months. Some days I can't get out of bed. All I can do is stare at TV. No reading, writing, going to work...There is only room for the pain and nothing in else in my life. Including thinking.

Oh wow! I'm not crazy, lazy, good for nothing, etc....after all. With secondary progressive MS and fibromyalgia, my pain is off the charts most days. This past year I find it just about impossible to focus long enough to pay bills, send birthday cards, read anything, etc. Although I feel badly for all of you who posted here, it's a relief knowing I'm not alone. Take that, all you "nay-sayers"!

It doesn't help the pain, but it does on the emotional level.

Here's to less pain for all of us...

Hi All

this is my first post - but I have been reading your posts for a while now

my wife was diagnosed with TN 5 years ago - she has had two operations and taken so many drugs I cant remember all the names - nothing has worked

I watch her suffering unimaginable pain every day - and I try to help - but nothing I do seems to help

does anyone have any advice about how I can be supportive in a way she might appreciate or have any ideas about stupid things carers say or do that I should avoid

any advice that can help me help her would be great

thank you

Hi Fuzz

I'm both a sufferer and a carer if that makes sense. For me, I'm married with my 2nd husband for 22 years, 2 days after our wedding I was put in plaster chest to hips for 3 months. My first husband was a suck it up princess, get on with it, his mother broke her leg when he was in his teens and in his words she never complained, she carried on cooking 3 meals a day, did the housework, ironing and washing, he used to tell me he can still see her standing at the sink in silence peeling the veg. I remember thinking what an incredibly selfish family, 2 sons, 1 daughter and a husband all doing nada to help. So in many ways, people who have suffered in silence before us have done us no favours. My tipping point was when he put me on the airplane from Samoa with his secretary who spoke 5 words of English to fly to NZ for urgent medical help, I was admitted to hospital and stayed there for 1 week before discharging myself to fly home to Aus and my family, oh he appeared 5 days after admission, getting home to Perth he took me to my GP who arranged for me to go to hospital pronto, his words to my dr were "is she really that sick" sitting in emergency he kept clock watching, I suggested he go and off he went with enthusiasm, 5 hours later after his home cooked steak and veg courtesy of his mum he turned up just before 8pm and winced when I asked him if he could ask for another pillow. I've suffered chronic pain virtually all my life from a heart arrest at 6 thru to broken vertebrae, failed surgery and in 2012 a seizure attributed to acute pain which ironically delivered more fractured vertebrae and 2 broken ribs, 2013 more failed surgery and now a pain stim implant. So enough if me.

It's the little things my husband does that make the difference to a crappy day, month, year. From doing the dishes, a load of washing, lately it's the offer to wash my hair as I'm not allowed to lift my arms above my head at present. He brings my medicine to me in the morning along with a cuppa. Feeds the cats and dogs, waters the garden, takes the rubbish out, cleans the toilets and bathrooms. Cooks and prepares meals, does the shopping. Don't get me wrong, there are many many times over the years when I have been able to do all these things and more, and still I try to do things, although right now, I must be good and do NOTHING as it will risk the pain mgt procedure which already is seemingly doomed. You will have to read previous posts if interested in what happened.

For me, it's the little things he can do, and does do, and most importantly, not to then tell me everything he has then done. There is nothing worse than a loved one telling you all they have done because the guilt monster raises its head and makes us feel oh so much worse. Other things he has done is accompany me on medical appts when he can and emergency admissions and always take the time to speak directly to the treating doctor so he can get an understanding of what is going on. We learned long long ago that if you don't ask doctors you can quickly be fobbed off. Yes there are times when I'm having surgery that he drops me at admission at 6am and goes on his way to work, if he took time off for every admission he would be unemployed. I had to give up work in 2012 after the seizure, I hope to get well enough again to return to work, I get jealous he can go to work and I can't. My world has shrunk to the size of our house and he will return to work tomorrow after this last week off. His alarm will go off at 3.55am, he will get up make his breakfast, feed the animals and water the garden (it's summer here) make me a cuppa and bring me my pillls, and then head off for an hours drive to work and a 12 hour shift and an hours drive home to then cook dinner and feed the animals and pick up their waste. My husband is my lifeline and so much more. He does all these things for me and I know he loves me. Like I said, for me, it's the little things, huge things in reality that many others take for granted. Hope this helps you in your journey, hugs to your wife.

My battery has just charged so I can get up and go watch a movie with my husband in the living room. Yay, a day out ... Lol

Fuzz,

You sound like a very caring compasionate man. How wonderful.

I have spinal fusion pain with the PN pain from waist down to my toes. My husband is willing do almost anything I ask, and I am very grateful. But, he does not seem to be able to show very much compassion.


I tell him how badly I feel because his life has changed as well because of my 24/7 pain. He just usually smiles and goes about whatever he was doing. I just wish he would give me a hug and let me know all is okay and he understands .

This is so important. Hope this will help give you some insight.


Gerry

You are very dear to want to know how to be supportive of your wife.
The best things my husband does is, when I am in the recliner or bed, he will rub my feet, or he brings me a hot face cloth and I just lay it over my face to relax the muscles. He massages my ears very lightly which is helpful. Atypical facial neuropathy is one of the pain issues I have caused by an infection that caused nerve damage.

Ask her what stresses her the most and handle that for her. I know for most of us, pain is there but we all still have to lead our lives.... bath, cook, food shop, clean, run errands, etc....do as much as you can to help the things that cause her the most pain. I know with TN, even air conditioning on the face hurts, or a cold wind or sometimes any wind, make sure nothing is blowing on her face. My husband bought me these fleecy ski mask kind of things that I wear in the winter when I have to go out but some days even
a piece of cloth on your face hurts. Lyrica is what helped me most. Honestly, I just got of it due to side effects but, I am sorry I did because I now realize how helpful it was.

Maybe research the best doc in a multi-state area that handles TN and make an appt and bring her. Research natural cures, I know, if I eat sugar, it really kicks my neuropathy into high gear so best to avoid it. B12 injections or infusions help neuropathy. Maybe find a naturopath in your area that may have holistic treatments. I know for many of us, if it has been a long time, you tend to feel beaten down by the whole thing. Being supportive and loving, as you obviously are, is very helpful.

Happy New year....I hope it is a better one for you and your wife.
Diandra