Anyone got any advice for getting on with your life when you have chronic pain?

[agenuinestubbs]

I have slipped discs and osteoarthritis in my neck, caused by joint hypermobility syndrome/EDS 3. I have also been diagnosed with fibromyalgia. I’m relatively lucky in that I am able to work full time, but my pain and fatigue levels have been getting worse over the past year. I often spend the weekend recovering from work or some other activity, and occasionally have flares that leave me bed/sofa bound for the weekend.

This thread isn’t so much to get tips for improving the pain, as I do have some strategies already. But I would like some advice for not letting it dominate. I’m currently having a really bad bout of neuropathic pain/migraine all over my head, neck and shoulders, and all my conversations with people seem to revolve around it. I’m sure I’m being so boring, and I don’t actually WANT to talk about it but it just seems to dominate.

We don’t have any children yet and I can’t really imagine being able to care for a child while being like this, but at the same time I don’t want to just give up on things because of my conditions.

Can anyone help?

I have given up on socialising, drugs, hospital and work, I wasn't enjoying or living my life and I believe we only get one.

I have decided to live simply and listen to my body, I sleep as and when I need to, I move when I am comfortable.

Hi op and everyone else on here who is suffering

I've suffered with severe chronic pain since I was 27, I'm 41 next month.
It started as sciatica and after being fobbed off for a long time i was finally diagnosed last year with fibromyalgia and I also have arthritis, OCD, anxiety and insomnia.
What a cocktail :)

For me, I have learnt to tell my doctor if something isn't working for me. I was prescribed Gabepentin and then Pregablin and neither did anything for me, apart from give me a bigger appetite than I already have.

I take lots of medication and am currently on the waiting list for a fibro management course at the Royal Liverpool Hospital.

My family do not understand how much pain I am in and how much it affects my life.
My otherwise lovely dad will ring me and the first thing he says is " and today's illness is?? " which I'm sick of. I recently said to him that whilst I wouldn't wish this on anyone, I would love him to experience one day with my pain so he could understand how horrific it is.

My ds is nearly 16 and my dd is nearly 8. They have never known me without pain issues and it does affect family life.

This year I have discovered Hypnotherapy and mindfulness on YouTube. It has been a massive help. I also don't make excuses when I need to rest, I don't work and am grateful that I don't, I'm unreliable at best.

I do make time for myself by looking after my skin and keeping my hair nice, I wear make up and always wear perfume which seems to lift me! I have had comments that I look too well to be sick but all of the above is to deflect from the pain, I hide it well I suppose.

With the OCD it's very hard as mine manifests around cleaning and order. When I'm in pain and my body is telling me to rest but my mind is telling me to clean I struggle to know what to do.

Also I only do things that I enjoy. I no longer go to events just because I'm expected to. I don't socialise very often as it affects my medication timings. I am most happy at home. I feel safe and secure and I've accepted what I've got and made peace with it.

Above all else i just wish there was more understanding on pain issues and how much it affects a persons life.

I feel safe and secure and I've accepted what I've got and made peace with it.

Acceptance and peace with the conditions and pain. Stop trying to be someone you can't be, stop trying to live a life others dictate (often well meaning) which is unachievable for you.

My DH suffers with chronic pain, he has spondylolisthesis with five fractured vertebrae - inoperable, and two knees bone on bone - too young for replacements. He was the most active, sporty and socially outgoing person, now reduced to being a prisoner in the house, particularly during the cold, damp winter weather. He takes meds 3 times a day, and tries to fit in what little activity he can around this. He hates the drugs, especially the Pregabalin which affects his speech and thinking, and make him seem as if he's drunk - people have actually asked if he's been drinking which he finds upsetting and he's lost confidence in dealing with people.
I've found it very hard to adjust to life not being what we'd planned. I was seething with resentment for a long time, going out to work, and doing everything at home but not having any fun stuff to look forward to. I totally sympathise with you GreyCloudsToday it's upsetting watching your peers enjoying life, couples doing things together etc. I've also been left on my own at parties, on holiday etc as DH has to take meds and get to bed. Many of our 'friends' don't bother with us now we can't socialise like we used to. That hurts.
DH has exhausted all treatment options and has been referred for a pain couse, goes to assessment day in March to see if his pain is bad enough before he can start.
I've had to accept that this is our life, and try to make the most of every small thing we can enjoy. Luckily we don't have any financial issues, we were able to downsize our home, and now we hardly go out or on holiday save a fortune - every cloud...!

My pain is nowhere near as bad as many on here but I do have Rheumatoid Arthritis, Osteoarthritis and allegedly Fibromyalgia. I say allegedly because I feel the consultant just dropped that in to explain some odd aches and pains he thought were not RA.

As someone said I sometimes wish my nearest and dearest could feel the pain I do for a day. I try very hard not to moan or talk about it because truly even those who love and care for you get sick of hearing it.
I am very fortunate in being retired and this all started when I was in my 50s and working part time. Even then I struggled to work two days a week.

Momzilla82 great to hear of those recommendations.

Lokide92 I’m so sorry to hear about your DH injuries. That sounds appallingly painful. I recognise just what you’re saying - I’m still deep in resentment-land. It’s not DH that I’m resentful of, just Fibro. It’s the pressure of babies and small kids too, I know things will get easier.

Glad you are in good shape financially. My work used to involve lots of travel but it’s no longer possible to leave DH with the burden of the kids, so I’m looking at a career change too. I’m terrified. I hope it all works out somehow.

Despite doubting its effectiveness I would give pacing a good go if someone could just explain how to make it work at work. Instead, when I ask they just look at me blankly. I get the feeling that they think I am not willing to try. It just feels like another stick to beat us with.

I have to work so what choice do I have?

GreyCloudsToday Good luck with changing your job. I can't begin to imagine having to also cope with young children, ours are grown up and away from home. I really hope for your DH and everyone else here with fibromyalgia that they find some new treatment.

@Weetabixandshreddies I get you completely
I can't do the pain management course because I can't take a full day off work every week. So if I didn't work I could have hydrotherapy, massage, pain management etc etc. But because I work FT - nothing. Oh physio, but that's been cancelled three times and I've given up rearranging because it means asking work (again) for time off and then making it up by working a 10hr day which then makes me feel shit 🤷🏽‍♀️

I have cauda equina, failed back surgery, autoimmune neutropenia, Hidradenitis supprativa

Ollivader it’s very difficult that the NHS Just isn’t geared up for people who have both chronic conditions and work. I’m hoping to drop a day at work which will let me do the pain management course, it’s so unfair that my option is use my holiday entitlement or take unpaid time off.

@Ollivander84

Oh that's terrible. Pain management here is 2 full days a week for 8 weeks, which is just ridiculous. So far this year I have used all of annual leave bar 4 days for hospital appointments. I just don't have enough A/L left for the course. I could take it unpaid, but I can't afford it or I could work my 2 days off but I can't manage 8 weeks of 6 day weeks. Which kind of makes a mockery of pacing really doesn't it?

As an aside, I've had a spinal cord stimulator implanted, which they use for failed back surgery pain, and it has been miraculous. Not sure if it's an option for you?

There really does need to be more support for people in work but with chronic illness. It just makes a stressful situation much worse when you are trying to juggle appointments with work too.

Look up the curable app. It’s literally changing my life on a daily basis.

Care to, you know, share a bit more about what it is?!