Back pain/ sciatica and isolation

Brain and nerves
1

Wondering how everyone copes with the isolation of chronic pain, especially back pain and sciatica?

I’ve been more or less housebound with it for 2.5 years. Before that, I could walk OK so got out nearly every day and could visit family more often, now nerve pain is affecting both feet so struggle. No family of my own, so living alone, which doesn’t help. Rarely get a visit or any contact unless I initiate and day to day tasks I have to manage as best as possible, just about doing it with medication. Wish I could be out and about again to see new people as feel invisible most weeks.

It’s not a pity post but serious question to anyone who’s experiencing similar? Can’t be good for health, force myself to be happy with manageable hobbies but it’s been a long time now. I chat occasionally on social media to people and work a few hours a day from home, so that’s some interaction.

How do you deal with it and the negative thoughts? Guessing most people, not all, have family at home but that brings about issues in itself. Thanks, K.

2

I suspect you are not in the USA. In which case, I identify with you in many ways, though thankfully am not at the immobility situation. I was hospitalised at Xmas & N Year, prone on my back for 9 days. I’m glad no nerves were trapped, but my spine is disintegrating slowly.

The nerve/neuropathy problem is presently getting to me & it doesn’t help that I am a carer for my husband who is actually at the moment quite well.quite well. 

We now live in a small retirement flat & there are residents who go to and fro & there is a communal lounge. They have weekly coffee there for an hour, and also a Bingo evening. Only about a quarter participate. There are a couple of them who get collected by community/charity transport to go to weekly luncheon clubs in the vicinity. 

If you are in the UK, there are suppport groups. If you’d like details I will message you separately.

You shouldn’t suffer in a lonely vacuum, which seems to be the situation. 

You have my heartfelt sympathy. Mine is getting worse so I am putting myself back on to Naproxen tablets, in the hope that will make a difference.

Estelle x

3

Hi, I do really sympathise for you,how much "help" have you had in the way of tests done or support given by occupational health? I have got to the point where even though i,ve had all the relevant tests done, my current Neurologist just regards me as a nuisance,i,m 67 and he actually said to me "if i was to get 100 men in here 97% of them would have back problems", i was lost for words, so after some thought i said to him " that may be the case, but they all haven't got the kind of spinal/nerve problems that i have,ie,can hardly walk/stand on left foot,can't sit down for more than 10 mins,and the sciatic nerve going up the back of the leg feels like an elastic band stretched to the max and about to break, i,m not going through all these tests and appointments here there and everywhere for the fun of it!" i've been enduring this pain for 4 years now and i,ve virtually given up with getting it sorted any time soon.I don't know if you,ve tried them already but the orthodontic insoles for your shoes are excellent i find,some are better than others so if you think they could be of some help for you let me know and i,ll send you a link for where i get mine from,anyway,as i say,so sorry to hear of your circumstances,all i can say is try to keep positive and keep pestering for treatment.

4

Thank you for replying Estelle, I am in the UK, yes. On a lot of medications now, just hoping I can get more pain relief to get out and be proactive about the situation. Hope you see some improvement too, Naproxen seem OK but amytriptiline (sp?) seem to be doing a bit more for the nerve pain. Sending best wishes, thank you x

5

Thanks for replying Phil, oh heck you’ve had a tough time of it too, that wasn’t a professional thing to say to you at all. Nerve pain is far worse than back pain, in my opinion, so I hear you. I’ve had a nerve block, acupuncture, epidural injection and physio. On gabapentin, Naproxen, sofadol, Amytrip (most are max doses, still room to go up with Amytrip). I have the memory foam inserts and shoes and all that stuff helps in the house (and 5 million cushions, seats, stools etc!) but walking and standing are killers, max of only a few minutes and desperate to get horizontal again neutral this last few days have been bad.

Wishing you the same, I do know how you feel, hang in there, I know it’s easier said than done. Foot pain sounds mild to other people but when severe it’s misery inducing. Wishing you well x

6

p.s Estelle, have you tried nerve painkillers? Just wondering if they’d help, apologies if you already have, just while I’m thinking, Naproxen do very little for my sciatica but help a tiny bit with back.

7

Hi Karen, I already have pregabalin. It was already prescribed for my Sjorgrens Syndrome. They’d given me Naproxen(pain & inflammation relief) at Xmas, but I dropped it in an effort to take less meds. That’s why I’ll give them another try. I may also try a TENS machine or one called sciaticalm I came across. I must also try and keep mobile but am not strict enough about this. One does get “down”. Personally I’m lucky as I was referred to Healthy Minds our local NHS dept for anxiety, stress etc. That was very helpful. So was the EPP scheme. Expert Patient Programme for people with chronic conditions. Perhaps you can try to access these? 

Do hope you can get yourself mobilised somehow.

all the best

E

8

Thank you, I’ll look that up. TENS machines are quite good for back pain, I got an inexpensive one and use it at times x

9

Hello Karen. I have been in pain for many years now 25 or more.  And pain just gets worse but I have never stayed on medication for too long. My last bad episode with sciatica was in 2015. And since than I have never been the same but as soon as I could stand without unbearable pain I went back to work but had and still have in my mind that if I become wheelchair bound I will find some job but never give in or give up.  Being strong and staying in touch with people that are in pain like we are really helps.  So stay positive and think that it could be worse. Stay Strong physically, mentally and spiritually 

10

Thanks for your reply. My last office based job I ended up working from home them ultimately had to end/they couldn’t continue. Was during a flare up with back, ended up sweating with the pain. Was disappointed as didn’t want to quit and let go of the social side of things (or the money) but although my pain threshold is high, it wasn’t feasible, unbearable. 

Now aimimg to get out of this house. I’m worse now than then, in terms of nerve pain in feet, so it’s an upwards struggle. I push through pain, have done it with back a lot, started walking as sitting was out of the question for any length of time, did that for years. This time around, the nerve pain has overtaken the back pain. Still tried though. Walking tiny distances, all it did was make my right foot worse (don’t know why).

thanks again, am having a big flare up of symptoms at the moment and it’s difficult without help, but I’ve done it before so hopefully will again. Take care, admire your spirit.

11

Hi Karen

I have been dealing with this over 2 years , before I worked , loved going out with my family ..now I am just house bound , my car sits on the drive as I can sit in it long enough to drive ,

I do have very depressed days as I feel life just passing by and cry alot ,then some days I wake up and try and stay positive , I'm in a wheelchair to get around as I can't walk now , I went online and started a course ,so when I have a good day I go on and do some online work , everything is home delivered , I have no friends visit as they have disappeared when I first went down with this so obviously they weren't freinds , I got upset tonight as my son who's in his late 20s said mum you have to push past the pain ,force yourself to walk through the pain ,

They just don't get it ,

It's so hard to try and explain the pain not being able to stand tall ,...

I try and keep positive , I bought books to read , meditation books and also puzzle books ,I've now started to learn to make jewellery ,I have all sorts of things to try and distract me from the pain ..

don't get me wrong there are days were I don't open my curtains or get dressed as the pain is so bad,I'm depressed and I cant even stay in bed all day as I can't lay down for long because of the pain ..I don't know wat is in store I keep praying that I'm going to wake up and it's gone just like I went to bed and it came ,

Waiting for another appointment so will see ...

I do know one thing ,the day it goes I'm going to be out all the TIME LOL..

How do you keep yourself busy,,?

Mimm xxx

12

Hi there,

Thanks so much for your reply, sorry to hear that you’re dealing with this too.

I try to keep my routine as normal as usual, get up early, get dressed and start work from home at the same time every day. Even though I have to lie down, propped up, to work, it’s taking its toll now. Small things like putting makeup on cause more pain, it seems ridiculous really, I used to be continually up and down and out every day for a walk so filling the time is getting hard.

I make jewellery too, or did, for years, it’s something I might try again. Also draw, read, watch far too much TV and like to paint but have to do it laying down & getting the stuff out/putting it all away is a bit much at the moment. Most of my time is spent sorting essential house stuff out, takes forever with rest before and after everything. Nights are the worst, with no one else in the house I just go up to bed in the afternoon, more comfortable there. Really hate bedtime because I haven’t done anything during the day so feels like another 24 hours have been unproductive.

I don’t know what the solution is. You sound the same as me, just want to get out! As for your son, I’m 100% sure people think the same as me, that I should just crack on with it. The thing is, for years I did crack on, with back pain, pushed myself to go out and sit in considerable pain, so if I say I’m unable to do it now, I mean I’m really not, no pushing through this.

Wishing you all of the best with everything, hope you get somewhere with your next appointment, I understand how frustrating it all is x

13

Hi Karen

Reading that it's like my own life , I hope and pray it's sorted for us both soon , it's a very lonely excistance ,

And yes the worst feeling is another day wasted ,and thinking is this my life now ,that's why I try and think of everything to keep my mind from being depressed , I have my medication delivered and the elderly gentleman always says I hope your sorted soon it's so sad to see you like this ,please keep in touch and let me know how you get on ,if you want to chat you can send private message .

Start the jewelry again it's another thing to keep Ur mind active ,

Take care mimm xxx

14

I’ve had the same said to me, 40 but feel older now. Thank you again, take care x

15

Hi There. My problems are similar, I'm widowed and family long left home. So as for the pain.. I accept it as my lot and determine to work around it as best I can. Wake up with a daily plan is my formula, shopping, cleaning(even if only a token attempt some days) Plan a nice treat,a trip to the park sounds simplistic but you are not sat looking at 4 walls Visit the library and museum. Pain is there of course,but it tends to improve the more focused you are on other things. I hope this helps a little.. Alan x

16

We do not know how lucky we are to live here in the UK, I have help when needed from GP and free prescriptions (over 65 ) cost free bus pass and if wost comes to worst a walk in A&E. We never give it a moments thought just how lucky we are,My back pain is bad but at least I have all this back up to rely on. We should really count our lucky stars,The NHS is not perfect but it's not far off !!