Pain that never ends...

After several spine surgeries, I am still suffering and have to limit my activities. Had to retire as a result of this pain and deal with isolation because I can't do much. Still , I have lots to be grateful for. Just wishing that doctors could find a way to help people experience relief.

[Hidden]

Quadruple your happiness factor

1) do something you have always wanted to do. If it's difficult work out ways to make it easier, break it down into stages

2) focus on the activity not how long you do it for, some days it may be 10 mins other days 3 hours

3) reward yourself with a treat (anything that makes you happy - listening to music, reading a mag, sitting in the garden). Try and avoid food as a reward, it's more about something that will catch your attention for a while, than instant rewards.

4) Once this is established into your routine, find something else to do using the same method

This gives you an activity to do in the morning and the afternoon, and you are getting 2 rewards as well, that's 4 lots of happiness a day.

Find out about spinal injury support groups in your area. They offer weekly social meetings, trips out and about.

There are plenty local social meetings and societies to join too. If there isn't one, ask the library, or local cafe if you can start a social group - knitting & chats are popular, though any handiwork could be included.

So that's 2 socials - one with people in a similar situation as you that has the means to organise outings, and another where you meet local people.

Got to make things happen for yourself.

[Keelaandkim in reply to Hidden]

What a very helpful reply

[Hidden in reply to Hidden]

Thanks zana just what I needed this morning a real pick me up x

[superannie in reply to Hidden]

That is the most practical help I have seen, thanks. Am going to put some into action in my life. At least I know I am on the right track. I think a lot about this kind of thing and wonder if I am clutching at straws but feel reassured.

[Hidden]

It's what I did when I was at rock bottom. And it worked for me. Now 12 years on, my life is full of activity and rewards, hard to fit my work in sometimes

Just start small and build on it.

Happy days

[nedd]

If only lynn.

Throwing you postive vibes.

I love it Zanna.

Activities and rewards.

Thanks.

[Janepepper]

I know how you feel. I too was forced to retire at the age of 40 on medical grounds. Now with the kids grown up and hubby at work I often find myself on my own from 9am-10.30pm. Don't see or speak to another human being. Because I have a teeny tiny bit of dignity left, I always have got up, got dressed and put my face on. Now I discover that most people think I'm making my pain and other problems up. Friends have walked and the loneliness walks hand in hand with the pain. Many weeks I don't step foot outside of my home. When I do it's usually for a hospital appointment. I wish I had an answer for you. But 8 years on, I'm as lonely as ever and still in pain. My only remedy was to take up smoking again, in the hope it will speed up my demise

[superannie in reply to Janepepper]

I know exactly how you feel. If you feel like it maybe we could share e mail addresses and chat. Are you on facebook? One of my lifelines at the moment. Helps me see what is going on in the real world. Ann

[Janepepper in reply to superannie]

That sounds like a great idea. How do we do that?

[mimimouse]

Janepepper sending much love to you, have you attended a pain clinic? Sometimes they have support groups. Loving your reply Zanna.xxx

[Kat3]

Hi lynn57 and Janepepper,

I sympathise with both of you, as I was the same – housebound for over 2 years, apart from medical appointments. I was not able to join any social support groups as I couldn't sit or stand, so had to spend most of the day lying down. Now I am a little better, due to an amazing craniosacral therapist, a specialist Iyengar yoga class for back pain sufferers and finally a decent physio (number 7!) who understands chronic pain. I also discovered that, though it hurts to sit and stand, it doesn't hurt to ride a bike - so I've been slowly extending the time I can be on the bike, and now can get to some of my appointments. I still can't sit long enough to sit in a restaurant or a coffee shop for more than 10 mins, but while it's nice out, I can at least get to a park – and lie down in the park! Unfortunately most support groups do not cater for people who can't sit, so I also became very very isolated and of course, depressed. Now it's a little better, as I can get out on the bike, though I've also found, like Janepepper, that many of my friends have disappeared! Amazing how friends were so nice right after each of my 3 back operations, but after a month or so, most people 'forgot' that I was still suffering and needed help with basic activities such as cooking and shopping. Luckily I have a partner who lives with me now, but he has 2 jobs and isn't home very much, so I am still on my own quite a bit. The best thing I can advise is to find a way (any way!) to get yourself out of the house somehow, whether it's getting a taxi or mobility bus somewhere or just getting to a local park. And secondly, like Zanna said, finding something that you enjoy doing or want to learn. You could do an online course or learn an instrument (I learned how to play my guitar lying down or painting (also lying down). Find something that stimulates you mentally. Even better if you can find others to discuss things with - the online courses often have discussion forums.

Also, speak to your doctor about trying out different pain meds - or perhaps you have already tried them all? I find Lidocaine patches really help. And Fentanyl (but that is harder to get). And pacing - look that up if you don't know how to do it. And yes, also a pain management course, if you haven't already done this - some are residential and can let you lie down if you can't sit for long.

Best of luck to you both.

Kat x

[Pugly29]

I never went for the surgery doc gave me 2 opportunities put up with the pain or likely hood a wheelchair, I chose to suffer I knew I had this but it got to that point because of GPS my disc is that Bad it goes in an out when it wants dehydrated spine they said I was imagining it so since 21 I'm now 29 I'm left to try an be as comfy as I can I can't trust any of them , hv you tried accupuncture it's not permanent relief but it makes a difference try see how u feel

[Pugly29]

Also a hobby that can distract urself jewellery making has Bn a saviour for me

[louiseamos]

Hi lyn57.. Just to say snap..I am 3.8.. Work.ed since was 14..pain since23..but head up got on..but this last year half unbearable..husband sick of me..had a op lower back 2011.. Left worse ended up on morpie..last summer couldn't sit thought my tail bone had exploded really..after months begging for scan..had..doctor said sorry on thing can help is a op..no way chance that again have to say worse pain ever....really right leg bum shock pain boy cryed for weeks did ease..went physio like told for now!! He won't touch me think a I've a.s arhrits!!!! Haveing my 7 th scan today..I will be glow.ing soon...few week ago s.atred to feel in well sweating..shivering..I'll really..fobbed off oh dizzy..drawing sent..doc fobbe.d off again..if out come of this I am not just leaving it..oh can't lift my hand .arms for long now..I've wrist knee neck pain..doctors roll their eyes ..feel if only for ten minutes have this pain you won't knew what's hit you..I feel I've been so let down..worse when have kids has letting them down too .♥ ✳❇knew how you feel xx lou

[Pugly29]

God that's scary Louise I can understand its what ended up happening to me was oh Emily ur only 18 must b a pulled muscle then I was imaging it because I hv depression I was hurting my bk every 6 weeks everytime getting worse then my bf steeped in going I see her suffer give her an MRI I even my own mother called me a lier but it was there dehydrated spine so the disc. Syatica as well I think that's down to constantly hurting it the fact I never got better the last injury was the only night I didn't hv a drink I was on a 3 layer stage my bro gf was very drunk fell into me this guy caught me at a funny angle an that was the start of my fight

[louiseamos in reply to Pugly29]

Pugly29.. Yes felt like no one believed me..did once had my scan back in o8.. First one told me I've a spine of 65 year old..never forgot that....hey and sciatica is very very pain full..electric shock s .numbness..bum pain..worse I've had..and had 3 kids xx

[mitziblue]

Sweetheart, what med's are you taking?

[Hidden]

I don't tolerate any of the pain meds, so I can only take Tramadol ER. I can take dilaudid, but they won't give that to me for any extended time. You get addicted within weeks. In 2012 I had a fusion at L2L3 and the doctor cut one of the nerves. My back side, thigh and between my legs burn like fire and I am pretty numb. The next year a doc at University of Pennsylvania redid that fusion and had to fuse 2 more levels. I still have another bad level. So in the past 3 years I had surgery for breast cancer (early stage thank God) and then the 2 back surgeries. I'm 60 now and I can tell you that I'm not bouncing back at all. I take things one day at a time. I try so hard but sometimes it is hard to take. I just had a CT scan done and will see my dr in a month. I can see by all the replies that I am not alone dealing with bad pain. I will pray for all of us.

[lynn57]

i am sorry everyone. My surgery went well. I am on low dose pain meds. My big concern is my COPD. I guess I was confusing on my post. I have stage two and it's very tiring, but so far spine is better.