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.

Nat I'm sorry to hear that you are experiencing such debilitating pain. I accept that drs have limited options but at the same time I don't think they understand what it is like to have pain all of the time.

Even the way the Nurse spoke to me demonstrated this, telling me that I should spend time enjoying myself and having fun. I go out with friends but I am still in pain. I don't enjoy myself as much as I did. At parties I am the one left sitting on my own while everyone else gets up to dance for example. I don't see how they are going to get me to develop the ability to rise above all of the negative aspects simply by doing some mindfulness/meditation. Reading the guidelines for these courses it very much appears that the driving force is to reduce patient's visits to doctors. It very much feels to be a way to blame patients for their inability to cope and almost saying that our pain exists only in our heads and if we only change the way that we think then our pain will go away.

I wish this course was happening sooner because I want to see if it helps or not. I don't want to have to think about it for another year, with no other help on offer.

The mind and body are connected more than most people think. There are tricks to blocking pain signals. Hypnotherapy for example. Once you learn the techniques you can engage them quickly. I would be open to trying it. Chronic pain is poorly managed with pain relief only. Doses need to be higher over time and then there are all the side effects.

My mum had one knee replaced last year and is contemplating having the other one done, though she really doesn't want it done. I have explained this concept to her and said she should give it a go. Chances are she can learn to live well with the pain. I can't repeat what she said to me. Btw, she is 75 goes to the gym twice a week, walks 8 miles a day three times a week and was walking without crutches 7 days post op.

I don't mean to be harsh but maybe you should take your own advice and not be so against a knee replacement. You say you are bone on bone in your knee, nothing will improve that pain, it will only get worse. Trust me I am speaking from experience. I was in denial for years until it got to the stage where I had no option. Yes you are young, so was I. Much younger people than you have replacements. It's about quality of life now. My first replacement is 10 years old and still going strong, my second is 4 years old. I have been able to experience things I could never of dreamt of doing before I had my knees done.

I remember saying to my consultant I would feel so old having a knee replacement and he told me it would be the exact opposite and he was right.

Not read whole thread.

But i think your arthritis would meet the criteria of a disability under the 2010 equality act. This gives you very strong employment rights.

Have you seen OH?

@opinionatedfreak I have seen occupational health but the upshot is that once they have made reasonable adjustments you have to be able to do the job. They are saying that they have done all they can and that if I still can't manage then I have to leave. I don't know what else they could do to help. The main pain at work is in my wrists, hands and shoulders and I don't know what I could do to help that.

My life would certainly be much easier if I wasn't working - the stress of trying to organise time off for hospital appointments is difficult. If I ever manage to swap my shifts rather than take holiday it then means that I lose my days off when usually I would do some housework or even just rest if I need to. It's hard not to focus on illness when your life revolves around appointments, daily physio and 2 days a week written off due to the drug I have to take. I try to stay positive but when the message seems to be "try harder" it makes it even more difficult.

I have supposedly recovered from my mental health crisis, but I know perfectly well that my life will never be the same again. I know I will never be able to do the things in my life that I always thought I would. I have had to abandon my plans, my ideas of the future, all my expectations of how my life would be. It hurts. A lot. And it is just so monstrously unfair. But I am very slowly finding a way to accept and enjoy the life I now find I have, mostly by stopping comparing it to the life I thought I would have.

Constantly thinking 'but I SHOULD be able to XYZ' is additionally crippling over the actual effects of my illness.

I don't know how much of this is transferable to chronic pain. But I do think that when medicine for the body runs our of answers there is only medicine for the brain left.

Of course you don't want to learn to live with your pain....you shouldn't have to! Its completely unfair! But given the options available it would appear to be the best way to go, particularly if fighting it is actually causing you to expend more time energy and strength (getting to appointments alone can't be helping) and causing you to focus on the pain which is known to make it worse.

It may well be that as with all other areas of medicine we are going to improve our knowledge in this area also. If it helps, you could see dropping back into 'living with it' as a temporary state of affairs while research looks for a better solution.

@Arthuritis

Before I address the reasons I'm really writing this, I thought I'd mention hydrotherapy. The Physio I am seeing now suggested I put my name down for series of training sessions at a nearish hospital. Because of my mobility problems he thought it would be helpful. It's at a purpose built pool with water heated to, I think, 32C. I did hydrotherapy before, but it was just under the guidance of my then physio at my local pool in cold water. The circumstances there were not good - limited times, toddler swimming lessons, etc.

The warm water pool dedicated to rehab sounds much more inviting.

I'm really struggling I think with the intrusion into my life. Does that make any sense?

Yes, I know exactly what you mean. At times the problems/appointments seem to take over your life, and it seems to be the ruling factor in your existence. I used to joke that no one should ever ask me how I was feeling because I had become one of those bores who will actually tell you exactly and at great length how I am.

In one way I was fortunate in that my job had good medical retirement benefits and I was able to retire early on my full pension because I was unable to fulfil the specific role for which I had been employed. I had assumed they would move me to a different job for which I was qualified, a job where I could spend my day mainly at a desk, but no, thankfully that wasn't so. If I had wanted to, they would have had to have adapted my work environment, but I was advised that it doesn't usually go too well.

Starting the biologic worries me because isn't that administered in hospital?

I'm in Australia, so maybe it's different, but no, everyone seems to administer it at home. I had to take the first injection to my Rheumatologist and he showed me how to administer it. It's almost foolproof. You just press the end onto your skin and press the button and the needle shoots into your skin and you wait about 20 seconds for it to retract and that's it! I was terrified - needles per se don't worry me, but the thought of injecting it made me feel like it was all too much. But, no, I have found that it's dead easy and, for me, virtually painless.

However, if you are having problems, I think the Pharma Co will send out a nurse to your home to show you how to do it, and even, in extreme cases, administer it. Let's be honest, the company is making a lot of money out of it (approx $au15,000 - $au20,000 pa - obviously not that for me).

All the best for whatever decisions you make.

Thank you both for your replies.

@riviana I have thought about hydrotherapy. I think that could really help me. It hasn't been offered on the NHS and I have tried to find it privately but without success. I will look again. I have an appointment with my rheumatologist in August to discuss biologics. I will follow their advice.

@M3lon your post is very thought provoking. I will think about what you've said.

There are various types of biologics, some are administered at home, some by infusion in hospital. Infusions are every few weeks. I inject with a regular needle, it's easy and pretty painless.

I have supposedly recovered from my mental health crisis, but I know perfectly well that my life will never be the same again. I know I will never be able to do the things in my life that I always thought I would. I have had to abandon my plans, my ideas of the future, all my expectations of how my life would be. It hurts. A lot. And it is just so monstrously unfair. But I am very slowly finding a way to accept and enjoy the life I now find I have, mostly by stopping comparing it to the life I thought I would have.

@M3lon, that pretty much sums up how I felt. Acceptance took a while for me but I eventually realised I had to look at the positives in my life and be thankful for them.

There are lots of positives in my life but at some point all of the enjoyment in these is marred either by physical limitations or by the pain and that is some of the problem. So going out I am limited by how much walking or stair climbing there might be. Even laying in bed - I roll over in my sleep and the pain in my shoulder wakes me up multiple times in the night and my foot throbs constantly.

When the nurse asked me how many times I wake in the night her answer was that mindfulness will help with that. Really? So, I am asleep so presumably there is nothing psychological registering my pain, then I roll into my side and pain wakes me up. But 20 mins of relaxation will stop that? Maybe it is that powerful but I cannot comprehend that right now.

Does it work like that? I do have a torn tendon in my shoulder so that possibly is making the pain worse but who knows?

Am off for hypermobility physio today and more imaging of my foot and knee so maybe something positive will come out of that.

Thank you for your support and allowing me to vent. It's good to hear views that challenge what I'm thinking and for some understanding of where I am at.

I haven't tried it myself (thankfully have not needed to), but I saw an article on CBD oil that is supposed to be really good for pain. It is one of the oils from the cannabis plant, but without the THC in it so you don't get the psychotropic effect or high.

It is legal - apparently they sell it in Holland and Barrett and other places as a supplement and it is supposed to be really good for pain. Perhaps don't if your work do drug testing (I am not sure whether it would show) but it might be worth mentioning to your doctor to make sure it doesn't interact with any other medication you are on.

It is 'natural' as such so it is not quite the same as living on pain medication and if may be worth looking at if there is a chance it could help. I have been trying to talk DF into giving it a go as he lives in a lot of pain and he is coming around to the idea as he didn't find the pain management course that helpful.

Had a couple of appointments at the hospital that is treating the arthritis (not the same one as pain management) and they have offered me different treatment. Scans show synovitis and joint effusions so I am going to have steroid injections into those joints. Also, I was seen by the specialist hypermobility physio who just "got it". She explained why I am in pain and how they understand this condition and all of the effects it has. She has booked me on to their patient education day, their hypermobility rehab programme which is 10 sessions of gym, hydrotherapy and pilates all run by this physio and then their pain management programme.

I left just feeling so different than the other day. She listened to me, supported me and understood. I didn't feel blamed for not coping as I did at the other hospital. I guess this is the key. The success of these programmes rests on the staff.

I just feel so lucky that a new dr that I saw last time offered me this chance.

That's great news! Best of luck with the upcoming treatments. It's all sounding very positive!

@Arthuritis That's great to hear. You sound hopeful and more cheerful in your last post. It's great to feel that you can see a little light at the end of the tunnel. I know the first time I saw my current Rheumatologist, he listened and, probably most importantly, empathised, and actually did things that were useful. It was like a weight off my shoulders.

A decade before, I had seem a different Rheum. who incorrectly diagnosed it as Osteoarthritis because my blood test showed no rheumatoid factors. I have since found that this is quite common. He had me doing all these useless tests and misdiagnosed my shoulder, which I couldn't move, as frozen shoulders, when in retrospect, it was the first major flare up of RA in that joint. I should have been suspicious as I got an initial appointment to see him within a couple of days.

You mention hypermobility; has any of your health team mentioned a link between it and RA? I only ask because I have some degree of it and years ago, had to do pysio on both shoulders (always have been a bit of a problem) as I had subluxation of both joints. I wondered if there is a correlation.

Interestingly enough, apparently there is a correlation between smoking and RA - I was a packet a day smoker, but ended up stopping before I had my knees replaced. I only found that out a couple of years ago. A case of 20/20 hindsight, sadly!

I am feeling more positive. It feels like there are things that I can do that help, rather than just learning to accept it.

When the physio was talking about the pain it was very much along the lines of we know that this is very painful and we are going to help you manage it. There is lots that can be done and we can show you exercises to minimise the damage to your joints, rather than the hospital where the tone felt to me like it's your fault you are in pain because you aren't coping well enough.

No one has mentioned the link between RA and hypermobility. I tested negative for rheumatoid factor and so that was ruled out. They were considering psoriatic arthritis because my symptoms suggested that but I don't have psoriasis so they diagnosed enteropathic arthritis secondary to Crohns disease.

I think at least some of my pain is down to hypermobility. I have had repeated dislocations and both shoulders sublux. My ankles are dreadful and I score 9/9 on tje Beighton scale, so all of the joints that they look at are hypermobile. I know they can't do anything about that but the physio was explaining that by making adjustments to the way that I position joints the load going through them will be different and this will make the difference.

I will see how this goes. I am lucky that I am at one of the leading hospitals for hypermobility and that I am now being seen within their specialist programme so hopefully the support will be right for me.

I am still so frustrated at my local hospital and their pain management programme. It felt so much like the patient was blamed for feeling pain. I need to be able to hope that this will get better and she just took that away from me in one meeting.

In my experience it is really about throwing everything you can at it and physio, mental management and hemp oil seemed to work wonders and now my pain is reduced drastically that I am hoping it is possible to get rid completely.