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?

www.noigroup.com/en/Home

MrsNai

I had a look at that website but I can't see much. It doesn't seem to open to the public.

My view is that much of pain management courses is contingent on people being able to have flexible working, help at home, endless resources to attend exercise classes, therapy and recreation.

If you have to work, in a job that doesn't offer flexibility or home working, have little help at home then pain management doesn't work.

For pain management to work you need the luxury of resources and choice.

I acquired a nerve root injury as the result of a medical procedure. For 2 years I tried every technique possible but the pain was unrelenting. I eventually had a spinal cord stimulator implanted. Pain went from 8/10 to 1-2/10. It is amazing. Life changing. Though pain from other conditions continues. But no amount of mindfulness, exercise, positive thinking gave me any pain relief.

If I had a knee replacement I think that my pain would be massively improved and would make a big difference to my life. For whatever reason ( my belief is financial) I am not being allowed one yet. Instead I am expected to participate in exercise (which only makes my knee pain worse) or mindfulness as a way to reduce my experience of pain.

If these techniques work, why is there any need for surgery or pain killers? Why isn't everyone with pain given this treatment? Would say the Queen be sent on her way with a youtube link for mindfulness and instructions to go to pilates if her knees wore out?

Thanks for all the responses. I know there are no fixes and it does help me feel less alone, although I'm sorry that so many people are suffering (and much worse than I am).

My pain has gone today, thank God, but I need to get some pain killers for neuropathic pain in case it comes back because nothing I had was touching it.

I dithered about whether to rest or whether to do some exercise - that's a constant balance. In the end I went to the gym and did very gentle cardio and feel fine, so fingers crossed. It's annoying not being able to do the exercise I want, but have to do what's good for me, which is basically Pilates (lots of Pilates) and low intensity steady state cardio. This means I have to spend more time exercising, because it has to be low intensity. But I am grateful to be able to do it at all.

I have read up on pacing etc, but like weetabix, it's not straightforward if you work. I am lucky in that although my job is quite stressful I do have quite a lot of flexibility about when/where I work.

I wonder about whether I should change my job and go part time, but if my health then improves it will mean that I've thrown away my career for nothing.

I just feel sorry for my husband having a more or less constantly ill wife.

Fibromyalgia and hyper mobility here too. Can really relate to the neuropathic pain in head neck and shoulders. Quitting my job has made me feel like a completely different person. I had planned on going part time after having my baby, but got signed off at 15 weeks due to SPD, toon early maternity and then decided to never go back. Honestly haven't felt better in years - even thought having a baby is hard work physically plus the sleep deprivation, I have felt so much better. I've only had short flares a couple of times when I've ended up all night with the baby. It really made me realise how much of my pain was actually being caused by stress, and not just the daily grind of work and commuting. After almost 20 months off work I'm looking at going part time in a different role after Xmas - so it'll be interesting to see how I cope!

I’m trying to keep positive about this course. But one of the hardest things is Ofer people and they’re well meant (mostly) questions like:

Have you asked for a scan
What is actually wrong with your back
But you don’t have cancer anymore?
At least you’re alive
So the pain is psycological?

I work mainly from home (as do my colleagues). I lie on the sofa most days with laptop and work. I think being horizontal for much of my working day gives me the energy to do school run etc.

Hi, I'm not sure if this will help but my understanding of chronic pain is that it's different from what we know as pain eg when you stub your toe, get burned it hurts but the pain goes when you heal. Chronic pain doesn't come from your joints/skin but is to do with your central nervous system getting the pain signals wrong. It's like a car alarm that goes off if you even brush past it - totally pointless and infuriating. Problem is it doesn't switch off either. This can make you depressed, you do less and your pain is worse.
Taking drugs and meds wont work because they are targeting the wrong bit of you (they don't work on your central nervous system where the pain is coming from).
The only way to help the pain - that we know of right now - is through pacing, relaxation, exercise - things that try to teach your brain and central nervous system that everything is fine and you can ignore the pain.. the brain's wiring will eventually change (well that's the plan) to reflect this and no longer pay attention to that car alarm.
Weetabix my hunch is that you aren't being given a knee op because it simply wont work and will probably make things worse in the long run.
I definitely second Explain Pain. There are lots of YouTube posts too.
I feel for you all. I grew up with chronic pain in my family and know how dreadful it is.

Pudding, chronic pain is, as implied by “chronic”, about time. It goes on for a long time and is therefore not termed as acute anymore.

There is medication which helps, to an extent, depending on the cause.

And I suspect with weetabix’s surgery it is as she has said, about money, not that it wont work which is quite insulting.

Your understanding of chronic pain implies you think there is no actual damage or anything wrong which isn’t always the case. For example, arthritis pain is not caused by the central nervous system, it’s caused by pain in the joints.

Puddingnpie, I think Weetabix has a physical/mechanical issue with her knee which is what causes her pain. That is very different from pain which results from a misfiring nervous system. I'm not a rheumatologist, but it would make sense to me that an operation would help that. Sadly the NHS is very under-resourced.

As for my diagnosis of fibromyalgia, my suspicion is that it's a catch-all diagnosis which they add on to the others to effectively tell you "We'll just put all pain down to the fibromyalgia and there's no cure, so that's that." I don't think there's anything wrong with my nervous system. My pain is entirely explicable when you consider the hypermobility (which causes chronic muscle tension) and the damage to my spine. However, hypermobility isn't fixable and the spinal issues could only be solved by an operation by a neurosurgeon, which carries the risk of making it worse. Stress does also precipitate flares, so I'm happy to consider alternative remedies.

I hear of a lot of people with a diagnosis of fibromyalgia who have not had an MRI of their whole spine. Damage to the spine can cause neuropathic pain in any area of the body, but MRIs are expensive - hence fibromyalgia is diagnosed.

Pudding you sound like my physio.
How can I pack when I can hardly walk?
How can I exercise when I can hardly walk the dog?
Ignore the pain? Nice idea. Care to tell me how? A gentle touch can cause me to catch my breath in pain. Some days I can’t walk without a stick. It’s debilitating and depressing. I don’t work and doubt I ever will.

How did you get a diagnosis of hypermobilyty agenuine? I have a lot of indicators and it’s been pointed out to me by non medics but can’t get anyone to listen to me because of previous medical history and surgeries which have caused damage.

I was diagnosed as really hypermobile and then again as not hypermobile at all. I am confused to say the least.

Sounds frustrating wolfie

I think I am hypermobile. But pain leads to less exercise which makes me stiffen up.

Yeah I think the alternative approaches to pain can be helpful, but too often they are given as a substitute for meds or other interventions, rather than as a part of holistic care. DH has done yoga, mindfulness, pacing etc. initially to stop getting brushed off constantly by the Dr. In the end some things have been helpful but not in any real way that would replace medication. Now he's a "good patient" the Drs take him more seriously, but why should that even be the case?

TheStarOnTheChristmasTree I really hope it will be soon. P.S. what a lovely, hopeful username.

Wolfie is your physio attached to a pain clinic? DH has had such a different experience with his than a general hospital physio or private physio. She sees so many people with chronic pain she has offered him really good advice. She's the HCP he's found most helpful.

I’ve honestly given up on physio. They can’t decide what to treat, have told me I’m overreacting, rarely see the same person more than two or three times and have misdiagnosed too. There was also the memorable idiot who said because I have full movement when lying on my back with my legs in the air that there was nothing he could do. Yet I couldn’t bend my knees to walk down the stairs.
My current plan? Take all the pills.

Ginandsonicscrewdriver - I saw a rheumatologist privately and he just did the usual tests where they bend bits of you back and see how far they go. He also ran blood tests and poked all the fibromyalgia pressure points. If you have a certain number of hypermobile joints plus pain lasting more than 3 months in more than 3 (I think) joints, you are diagnosed with what used to be joint hypermobility syndrome (I can't remember the new name). He also said I have fibromyalgia based on what I told him about my symptoms. I had the MRI privately too.

Sounds like a plan Wolfie!

Close friend has fibro and lupus and constant pain (dulled a bit when she's just taken her painkillers, agony when wearing off but too soon for the next ones). She realised she would never be able to do the job she trained for and now works in a related field part time with some flexibility to do more if things improve. Although she has to rest a lot, she found she had to have something to focus on otherwise she would go crazy so does something almost every day despite the pain. She doesn't want to be treated like an invalid but needs those she works with and socialises with to be understanding and has therefore learnt to choose friends wisely. She has also concluded that she is never going to cope with a DP or DC and that is the hardest thing to accept. In short she has had to choose a life (job, relationships)that suits her pain but not allowed the pain to be the focus day to day.

I've got Fibromyalgia, ME/CFS, Arthritis & joint hypermobility, plus I'm waiting to see someone for an assessment for Autism & already have long standing complex anxiety & depression. If I took every tablet I was prescribed I would be off my face all day, I have to choose between being pain free & doped up or be in pain but have a clear head. I've done pain management courses, exercise therapy, physiotherapy, you name it I've tried it, the only thing that helps me is CBD oil, I've managed to reduce my drugs by half & while I will never be pain free, it's at a level I can just about live with. Every time you walk in the doctors surgery they throw another prescription at you, you could go in with a limb hanging off & they would say it's because of your health conditions, once you get a diagnosis it blinds them to anything else you have wrong with you.

Hi,

I too have EDS 3, PoTS, fibromyalgia, CFS, FND etc etc (the list extends often), 3 things I've found have marginally "worked" to improve quality of life;
Working even more part time.
Hyperbaric oxygen therapy has removed some pain entirely and improved energy levels.
High strength probiotics and a better diet (less processed more real food).

It's truly utterly shit and you have my full sympathies.

One thing that I would advise came from an elderly lady who suffered too: don't diet / follow fads. Eat balanced nutritious meals. I followed this advice for years. Occasionally when work gets busy and I scrimp on meals I feel much worse.

Weetabix my hunch is that you aren't being given a knee op because it simply wont work and will probably make things worse in the long run.

I need a knee replacement because I have severe osteoarthritis in all three compartments. They have already said it needs to be done, it's just that I am too young and if I have it done now I will need at least 1 more. If I were 10 years older I would be having it done now. How can they expect me to live and work for another 10 years with bone rubbing on bone? And I'm sorry but I take tramadol for the pain. I don't think that relaxation is going to do anything. How is it chronic pain when there is a very real ongoing problem?