AIBU to think I'm being palmed off?

[Arthuritis]

I have a mixture of inflammatory and osteo arthritis affecting several large joints. In my mid 40s.

I work and do regular exercise to try and strengthen the joints.

Now being sent on a pain management course which appears to comprise of some physiotherapy (I already pay for regular physio) but mainly relaxation, pacing and mindfullness training. Looking this up, it seems that the idea is to help you accept the pain and to live with it, rather than suffer from it.

Aibu to want, actually, to have my pain eased in some way?

I've looked at pacing before - intersperse activity with periods of rest - but it doesn't fit with being at work. I can't rest whenever I want to or vary my tasks.

I also make use of heat or ice packs at home but these are impractical when I am at work or out.

Not wanting to brag, but I don't think that I manage too badly. I still work, i exercise at least 3 times a week, I do the housework but I'm in pain and tired and sometimes just long for a tablet that could take the pain away.

If pain can be taken away by changing your mindset why do we mend broken legs or replace joints? Why don't we get people to "think" away their pain?

I don't want to go on this course being a negative nelly, hence my post here. If someone has experience of it working then please tell me. Do I need to be open minded about this?

I just fear that I am being palmed rather than treat the reasons for my pain.

I'm another reformed sceptic. A lot of it is based on the gate theory of pain, where your state of mind alters how the brain interprets the pain signal. The way I had it explained initially was that if you stub your toe when you're upset because of an argument with your husband the pain is awful and you really focus on it, whereas if you were out having a great time doing something and did the same injury, you'd likely shake it off much quicker and actually experience less pain from it.
The problem with chronic pain is that it can very easily become all encompassing because there is no true relief. I actually think that the fact that you are managing to work and function means you're naturally doing a lot of the stuff already- but this might just help you to hone your skills a bit more... and every little helps!

What happens if you have something that could be put right and you are being encouraged to use mindfulness to cope with the pain

I don't have personal experience of it, but I found myself in a group recently that included a few CF/fibromyalgia patients who said they couldn't get out of bed for pain for a long time, but retraining their brain to feel the pain less meant they could mostly function now. I'm guessing it might well be a case of needing to believe it'll work for it to work, but I'd be inclined to keep an open mind

There is a lot of evidence that a multi faceted approach to pain works. The aim of the course will be to give you a "toolkit" of self management techniques that you have to support you to manage your pain. Sadly with your conditions, being pain free is very unlikely, but it can be better controlled with a combination of pharmacological / physical / psychological and lifestyle adaptation approaches. It sounds like you are already very active which is great, many people with chronic pain are not as it's natural to feel that exercise will make it worse (loads of evidence to to contrary). Pacing can be challenging, but is really important to avoid "boom and bust" cycles. If work are aware of your condition then you're are entitled to ask for reasonable adjustments so that you can work but also manage your condition and health within the workplace. Re mindfulness, pain has a huge psychological component. This isn't denying it having s physical cause, but again giving you tools to cope with it. To the poster above who was sneery about physio s doing mindfulness; if they are, they will have had additional training.
Many people feel the same way as you do, OP, but these interventions are offered because they work. Making you feel as in control as possible over how you manage your condition really works. The NHS isn't fobbing you off, it's using the evidence base and implementing best practise.

Thank you all for being so encouraging. That's why I posted - I needed to hear opinions that were different to mine.

I will definitely give it a go. I think I'm worried that it will be aimed at people that are doing much less than me and I won't get much out of it. I've been very lucky to have found a physio who really challenges me and won't let me give in so I am in a much better place than if I'd been pandered to.

With regards to work they feel that they've made as many adjustments as they need to. They've been very clear that if I can't manage now then I am not fit to work and will need to leave.

I am just so tired of trying to manage a semi normal life whilst being in pain. It is exhausting. If this programme can reduce my pain - fantastic. If it is just going to tell me to put more effort into masking my pain I don't think I have anything more to give.

Taking on board what you have said I shall go along believing it will work and see what happens.

Just make sure you have what they say you have.

10 years ago I was told there was nothing they could do.

The NHS thought I needed a new hip but weren't sure what exactly was wrong with me and had sent me for physio for the last 7 years.

I was in constant agony and I could have been in the same position as you OP where if it had been available I would have been referred to a pain management clinic.

What was needed was a proper diagnosis but the consultant never looked at me.
I don't just mean he never examined me I mean he never came within 10 feet of me never mind actually glance in my direction.

As an aside I think in years to come it will come out as another NHS cover up. I know people who tell anyone who will listen if they have a problem and get put under this consultant then live with the pain as he will only make it worse.

In the end as a final last try to get me diagnosed I went private.

Within 5 minutes of seeing someone far less qualified than the esteemed consultant I had a diagnosis. She said hip pain was sometimes deferred pain from the back. She took one look at my back and immediately could see bones sticking out where they shouldn't be sticking out.
This woman gave me 15-20 minutes of physiotherapy and a referral to go and get a second opinion and a MRI to a large private clinic.

I left her rooms 45 minutes later still in pain but feeling happier someone was taking me seriously. Then a few hours later I was pain free. It lasted for an hour.

Every time I went back the pain would stop for longer and longer.

After the referral to the larger clinic and the MRI confirming I had slipped discs I was u der them for physio for about 6 months and I became free of pain because I had found what the problem was.

The idea you could be walking around with major physical problems that need proper surgery or physiotherapy but get pain management instead is very very worrying

Ive done it! They do a medication review too.
I was given a course of tai chi. Went to 4 or 5 out of 10 sessions. I went rushing in having parked miles away and everyone else at the minimum had a walking stick. There were people in wheelchairs with frames and crutches. I felt like such a fake
I loved the relaxation bit and would zone out completely but you’re not supposed to 😂
I didn’t gain much from it
However, I then had 10 sessions on Alexander technique
Dear god it was like being touched by an angel
What I also got was the medical ‘permission’ to request a change to my working hours. I used to do a reallllly long day and 3 supernshort now i do 2 x 7 hrs with an hours lunch and 2 shortish with 20 min breaks
Soooo much better

I hear you Oliversmumsarmy
I was lucky in that I have private cover so I know exactly what’s wrong and it’s nothing major. Just a constant wearing niggle with flare ups
But so many nhs only people haven’t hadnthe scans and steroid injections and nerve blocks I got
First nerve block permanently removed 90% of the pain. I couldn’t bear to sit for longer than 20/30 mins. Had to lay down ornwalk or move
Getting rid of the last 10% was impossible BUT it’s definitely improving.

Finally

I didn't get any pain relief just shouted at for not doing the physio. Apparently if I was I would have been getting better.

The NHS are sticking to the x ray in my file which shows I have arthritis in my spine.

I have tried to tell them that I don't have pain in my back. But they keep referring back to this x ray.

Problem I have is. I never had an x ray.

I know it is not the thing to say but the quicker the NHS is privatised the better.

I had an acute onset of RA immediately after the birth of my daughter who's now in her 20's and have lived with chronic pain ever since. Not once have I been offered the chance to attend a pain clinic, I've just had to get on with it. It took me a long time to accept that living with pain was my new normal. I have been walking about on a really painful foot for 8 weeks, totally pissed off I can't exercise as normal only to find out after an x-ray that I have 3 fractured metatarsals. I can't take opioid based pain killers as they make me sick as a dog, I've just put up with it, my pain threshold is quite high. I'm not sure a pain management course would help me as over the years I've adopted my own coping strategies. Yes it's bloody painful at times but I've long accepted there is no magic bullet. I have total sympathy with anyone who lives with chronic pain, it's horrible.

Thanks all for your advice.

I have had treatment privately and on the NHS and everyone agrees on the diagnoses. I've had steroid injections and radio frequency ablation done privately and they really help me but I am able to get the injections much less frequently on the NHS.

The idea of fobbing me off with pain management when I really need surgery or something does worry me. I understand the theory of chronic pain being a sort of over reaction by your body, creating pain when the long gone painful stimulus is no longer there. But, how does this apply when the painful stimulus is there and still causing the pain? This is where I struggle to understand.

I am also worried about being the fittest person in the room and not benefitting.

I feel like I have educated myself and I've been lucky to have found a physio privately that has already worked through this with me. I've moved departments at work, I've reduced my hours and got a good exercise programme going. I take 2 different DMARDS and an anti inflammatory but I still have pain. I get the feeling that if I don't do the course the clinic won't offer me anymore help.

There was a young lady of Deal Who said
"Although pain isn't real,
If I sit on a pin
And it punctures my skin
I dislike what I fancy I feel".

My dad is an arthritis suffering gardener and he thought he might have to give up the job with the pain he was in. He's recently started taking CBD oil to see if that works and for him it's been amazing, it's honestly changed his life. Different things will work for different people so I'm not suggesting it will definitely work for you but it might be worth a shot.

@DobbyisFREE I did try that. I took the capsules but I didn't see much difference. I'm not sure if I took the right strength or amount though, there were so many options. I will have another look.

So had my assessment meeting.

This course is 2 full days a week for 4 weeks. I explained that I just cannot take this time off work. All of my annual leave is now committed to other hospital appointments and I can't afford to take it unpaid. Was told that there is nothing else that they can offer.

The idea of the course is to help you live with the pain, to become more active, happier, enjoy life and to live in the moment and not think about the future. An example given was that a 3 month goal might be to walk to the shops and back!! I explained what I already do, the exercise that I do etc and that what I really want is just a top up of pain relief to help make it more comfortable. There is none apparently.

She explained that chronic pain occurs when the original source of pain is long gone but the nervous system reacts as though it is still there. By learning to exercise and relax you can turn this down.

I have joints where bone is rubbing on bone. That hurts. That will just get worse until the joints are replaced so how has the original source of pain gone? I already exercise so what are they going to do more than what I already do?

Oh, and the 1st available course not available until next year so how do I manage until then?

If they can offer physio specific to arthritis then great. Help me to reduce pain by doing things differently, great. I don't like tablets because of the side effects so I'll do any alternatives, as I already am doing but they are just offering more of the same but in a year's time and by going onto half pay for a month!!!

There must be another way? She also said I need to not make going to work my priority. Do more enjoyable activities, spend time with friends and family. How? I can cope with working OR going out. Not both. I get too much pain sitting or walking too much. I'm sure work would be very understanding if I keep going sick or explain that I can't come to work because I've been out the night before.

Sorry for ranting. I'm so frustrated. It feels like I am being blamed for being in pain. Basically I am allowing myself to feel the pain and allowing it to affect me. I should be happy despite being in pain and the fact that I am not is my fault.

Are joint replacements an option for you? Do you mind me asking how old you are?

What solution do you think they should be offering you?

@SpandexTutu

I am 48. I have tri compartment arthritis in my knee and so that will need replacing at some point but I am very reluctant to do that now. I'm young enough that I will need it done again so I want to hold out for as long as I can. The other joints I don't know about. Some of them are only affected by the inflammatory arthritis, some by both.

What would I like to be offered? I don't know. I guess the option of pain killers that I can take as and when, particularly when other options aren't feasible. So I can use ice or heat packs at home but not really at work.

I'm not dead set against what they are offering but I think that I am already doing it so what will I gain by taking 2 weeks off work, unpaid, to do this? Plus there is a year's wait. What do I do until then?

It does feel like they won't or can't offer anything else and so they turn it back onto the patient.

Why do they do joint replacement surgery if we can all learn to just live with our pain?

Do they give you the standard pain killers? Or do you prefer not to take them?

If your knee is so bad it's affecting your everyday life and you have been told it needs replaced I would go for it. It's about your quality of life now, no-one knows what the future holds. I've been in your position, put it off to the point where I could barely walk at all because I didn't want to feel 'old' by having a metal knee. Best decision I have ever made…twice. My current condition (foot) happened due to too much and too hard exercise too often, it's common in athletes, runners etc.

I take etoricoxib, an anti inflammatory. I don't like opiates because they make me feel very sick.

They were talking to me about trying accupuncture, which my physio does, but there is just not enough time to do that plus other stuff.

I don't know what I want really. Just some relief from the pain. She was saying how exercise makes the pain better. No it doesn't. I do it despite the pain because I am told to, to keep my muscles strong. It doesn't relieve my pain. Sometimes it makes it worse.

I understand totally about the opiates, I have the same problem. I took them for a week after my last knee replacement along with a prescribed anti-emitic but I still felt sick as a dog.

Oh @Arthuritis. I’m sorry to hear this. I’m afraid my experience could be recounted in almost the same way. It ended up fucking with my mental health so badly that I gave up. It was very ‘one size fits all’, and you weren’t expected to be working, or doing any research into your condition. Getting a response of ‘Ms x has a remarkable insight into her condition’ didn’t make the pain any better. So I’ve walked away.... I see a private Physio and Pain specialist - both of whom I feel ‘get me’. It’s shit. I’m 42, not 82. I’m so fed up of it. It doesn’t help, but maybe it’s a reinforcement that it doesn’t have to work for everyone.

I'm sorry to hear you are in the same boat Holla. I do see a physio privately and I have also seen a pain management dr before. I can go to see him again but it is just so expensive.

If this pain management course is the best treatment then why didn't eg Andy Murray do it, rather than pull out of Wimbledon? Why did Lady GaGa cancel her tour? Surely both of them could have done it and then carried on. I know I'm being silly but honestly it really feels like there are other options, like proper targeted physio or OT, hydrotherapy etc but these will be expensive so they turn it back on the patient.

The nurse said that they will teach me how to pace and I explained that I have tried but that it is impossible at work and her reply was that yes you can only do it when you have control over your time and environment so don't do it at work. Well, how is that helping my pain when I am at work? I was also told not to prioritise work over having fun/doing things that I enjoy. It really felt like I had fallen into a parallel universe. Do they not understand what this feels like? I wake multiple times during the night because when I move an affected joint the pain wakes me up. Her answer to this is to get a good bedtime routine. But I go to sleep easily. Will a bedtime routine stop my shoulder from hurting if I lay on it?

I think the problem is that I am not their typical patient in that I am active, I'm doing a lot of the things that they recommend already and they are not able to offer anything for me.

I think I am still in the denial/fighting it phase. I am not ready to accept that this is my life and to learn to live with it. I am quite sure that if I saw an orthopaedic surgeon that they would have surgical options available but I am truly scared of embarking on that. I fear that multiple surgeries (on my many affected joints) might leave me worse off. The same as knee surgery. I have heard that a 2nd replacement is not very successful and if I have my 1st surgery now I will definitely need it done again.

In the booklet that they gave me it says that "pain doesn't equal damage" but they are giving an example of someone having hurt their back and being reluctant to move. Can I think the same about an arthritic joint? Can I ignore that pain and continue an exercise if it hurts without causing more damage?

Hi op, I totally understand your situation.

I too have been referred to a pain management course for my fibromyalgia.
I've suffered for 13 years and am 40.

I cannot remember what it's like not tom have chronic pain. It becomes the new normal.

I also have slipped discs so the pain is horrendous. I do take a lot of medication but it only takes the edge off and nothing gives me relief.

I've been doing a bit of searching on YouTube and have been doing some mindfulness and hypnosis specifically for pain relief and chronic pain and most times it really does work!

One of my doctors is extremely supportive and another one believes it's all in the head which I find incredibly offensive.
There is no mistaking this pain and the mind numbing fatigue that sits along side it.

I'm going in with an open mind as i cannot continue like this, it's physically and mentally draining me and some days I just want to be in hospital on the strongest pain meds and rest.

That sounds extreme I know but there's only so much pain a person can take.
Hugs to you