Fed up.

[lilcherub]

Hi all, it’s been a while since I lasted posted on here, that’s mostly because life took over. I was referred to the Pain Management Programme by the Pain Clinic and I can honestly say it was the biggest waste of time. I went for my assessment and spoke to a Doctor, Psychiatrist and a Physio separately but they must have spent a little over 5 minutes each assessing me. A week later they have decided that I wouldn't benefit from being placed on the programme. Now I'm in limbo as they have discharged me from their services and I cannot get any sense from the Pain Clinic as to whether or not I am still under their service and if I am to expect another appointment with the doctor there. My GPs is pretty dismissive of my pain at the best of times as to quote them “I can walk unaided” so therefore my pain isn't too bad =(. Apologises for going on I'm just feeling fed up of being passed between pillar and post yet I'm still none of the wiser as to the cause of my pain or if there’s actually anything that can be done to make it manageable. Most of the time my GP’s answer is they will put me on the sick even though I manage to work full time and I have repeatedly told them that I have understanding bosses who allow me to work from home if I am feeling too rough. Most of the time I can manage my pain well enough that it doesn't affect my day to day life but lately everything seems to be taking its toll on me. I'm starting to feel like I'm a burden on those around me.

[Odhrain1]

Go back to your GP or see another GP and explain your case again and how you feel in limbo and unsure of next steps. You can also try and ring the Pain clinic and explain you are unsure of whether you are still with them or not. Its sounds like you are managing your pain and yes you will need energy to ring Pain Clinics and Doctor's etc to fight your corner . Are you clear on what else they can offer you to help with your pain management? Would you like to do some Physio, CBT etc

Your are not a burden and don't think that. With chronic pain there are good day and bad days.

[lilcherub in reply to Odhrain1]

Hi Odhrain, I have seen 3 GPs and they are all very dismissive. I have copies of my Doctor's notes and let's just say it wasn't pleasant reading. I have phoned the Pain Clinic several times and they keep telling me to call back as they're not sure what the Pain doctor's plans are. I have had Physio a few times over the years but it makes the pain worse and I end up not being able to walk for several days afterwards. I'm not sure what CBT is could you explain please.

When I first went to the pain clinic the nurse there mentioned acupuncture, but it hasn't been mentioned since, even though I have tried to bring it up myself.

Thank you for saying I'm not a burden but some days it feels that way.

[RAYJAYC]

Hi lilcherub

Firstly, take a few deep breaths and try to relax a little. (I know, easier said that done but I try!!) At the moment you've got a sorts of things spinning around your mind so you're feeling bewildered I would imagine.

I'm sorry that the pain management programme didn't work out - have you asked for feedback as to why you weren't deemed suitable? Do you get 'copied in' to all the letters sent to & from the different people/hospitals?

I read that you're still working - good for you! That in itself tells us you're not the burden you feel you are!!

Are you on any regular analgesia? Do you have anything slightly stronger for when it gets particularly bad?

If your GP won't acknowledge your problems, have you considered changing practices altogether?

I haven't read your previous posts as I'm relatively new on here so I don't know anything about you but if you've been seeing your local pain management clinic then someone, somewhere has taken notice of you - maybe ask to speak to a manager in that pain team to ask why you haven't heard anything back? Once they know you're not going to take being 'fobbed off' they might take notice of you again! Also your hospital will should have a PALS department - getting them involved can help too!

Don't feel you're a burden - like I've said, you're still working so definitely not a burden!!

Have you considered Pilates, Yoga or massage to help with your pain management? Sometimes we have to be proactive in seeking alternative 'treatments'!!

Keep us updated and feel free to 'moan' or 'rant' on here - everyone listens!!

RAYJAYC

[lilcherub in reply to RAYJAYC]

Hi Rayjayc,

I've had my pain for 20+ years so I'm used to being fobbed off to be fair. Unfortunately I've already changed GP surgeries years ago as my previous GP decided that 8 paracetemol a day for life was the answer to all my pain worries. I'm currently on Tramadol although it doesn't particularly help much, it is better than the alternatives that my GP is offering me.

I am copied into letters from the hospitals now as my Doctor's surgery were taking weeks to sort out any medication the pain clinic decided to put me on.

I'm very lucky that I have understanding bosses who know what it's like to suffer with knee and hip pain as they've both had replacements over the last 2 years so they're great with me and I'm well looked after in work if I'm having a bad day.

To be fair I asked my GP to refer me to the Pain Clinic as he wasn't doing anything other than bouncing me back and fore to the Rheumatologist who would always say "there's nothing we can do" so I insisted to be referred.

I have tried yoga but not Pilates, so I'll have a look into that thank you! I find massage tends to make my pain worse when someone actually touches my hips or knees =(

Jo

[RAYJAYC in reply to lilcherub]

Have you seen a Psychologist within your local pain team?

If there's nothing 'clinically' that can be done for you then maybe you should ask for referral to him/her to help you with pain management strategies? This could be your next step in how to get through day to day!

The CBT (cognitive behavioural therapy) will then begin on an out patient basis.

It's worth a shot - better to have something fail than not getting the chance to give it a go, I think!!!

RAYJAYC

[lilcherub in reply to RAYJAYC]

I saw the Psychologist for about 5 minutes in my PMP assessment.

I have no idea what's wrong with me and neither do the medical staff that I've seen over the years. I will mention CBT to my GP and see what she says.

Thanks for the advice.

[johnsmith]

If you think you are a burden then you are. However, you have experience which is of benefit to many people, and to these you are a Godsend.

Able body people who are of good health cannot comprehend the limitations of living with a health disability. You cannot engage with the you scratch my back I will scratch your back activity when you suffer from a long standing health disability. You cannot reciprocate like with like and I know from my own experience that this can make one feel a burden. So one finds people who can empathise with you from their own experience and lo and behold you are in a situation where you can be useful to others.

Have a look at stat.org.uk. This the website for the society of Alexander Technique teachers. It is worth going for an Alexander Technique lesson. This will give you another prospective on things.

It is worth going to see a McTimony chiropractor. They may or may not be helpful. But they will give you a means of seeing a different way of looking at things.

HAve a look at

cittaviveka.org/

This is the website for a Buddhist Monastery. Read or listen to some of their talks. It will give you a different prospective on mental health that is light years ahead of anything that medical psychiatry or psychology can offer. The monks at the monastery study how their own mind works 24/7.

You need to study yourself. Tools to do this are meditation, mindfulness, Movement awareness (In my case through T'ai. chi, Alexander Technique and McTimony chiropractic". Yoga is another movement awareness discipline.

Hope this helps.

[lilcherub in reply to johnsmith]

Thanks for the suggestions I will look into them.

[Clycat]

Hi,

You say that you are still managing to work and I wonder whether you have medical insurance through work or even if you would be able to afford to pay yourself for a private consultation with a pain specialist. I know this is not ideal but with a private consultation, you will be listened to and not rushed or made to feel like you aren't "ill" enough for their attention. Something to consider maybe.

Take care,

Jo

[lilcherub in reply to Clycat]

Hiya,

Unfortunately I don't have medical insurance at work and I can't afford to pay for myself at the moment. But I will have to try and save some money to get it sorted.

Thanks x

[SazRah]

Hi! I know how it feels to be given the run around by doctors! I would say that you have done extremely well to cope with things for so long by yourself. Although I have a PhD in medicine I'm not a clinical dr, so this is just a somewhat educated opinion from someone who lives with pain too! I presume you have had mri scans on the affected areas that have come back negative. I would guess that you are suffering from centralised pain, this is backed up by the fact that you are managing to walk unaided. Don't worry about this term, I'm not in anyway saying you don't have pain, it's just coming from somewhere other than your affected areas. The analogy I can give is that if someone stabbed you in the leg and ran off, and people came to your aid, you would feel pain. If however someone stabbed you in the leg, and there was no one around and they wanted to stab you again, the pain wouldn't bother you as you would be too busy running away. People think this is due to adrenaline, but it isn't, all adrenaline does is alter your heart rate to get energy to your muscles so you can run or fight. Adrenaline doesn't have anything to do with pain. Its hard to explain without pics but when the knife goes in to the leg the nerves send a signal to the brain and release 2 chemicals, think of one as a (+) the other as a (-). One of these tells the wound to feel pain(+) the other is to stop feeling pain (-). Every time you injure yourself both chemicals are released but in different quantities depending on the severity of injury. In the first example above you are safe so you release more (+) than (-) so you feel the pain. In the second because there is danger the brain releases more (-) to counteract the (+) so you don't have the pain and you can get to safety. Muscles and tissues themselves don't feel pain it's the brain that feels the pain, that's how it is that you can have surgery and get put to sleep and not feel the surgeon cutting you. Sometimes something can go wrong with these chemical signals and your brain can tell you to feel pain by releasing the (+) chemical without there being an injury or problem with the area where pain is felt. It is inaccurate to say that it is 'in your head' as you are definitely feeling pain, you aren't imagining it and it really winds me up when people say that. It is however possible to take control of the brain and override the signals that send the (+). It isn't something you can do easily by yourself which is where the cognitive behavioural therapy comes in, but I'm only just finding out about this myself.

I would say also that I wouldn't dwell on not being suitable for for the programme, it's hard to take I know but there really aren't many places available in the whole country so they have to be reserved for the worst cases, people who aren't able to walk or work or carry on at all without it.

I think that dealing with pain for a long time without proper medical support definitely takes its toll on everyone, and can start to affect your outlook...all your thoughts start to be about pain, or relate to pain, and that can make it worse without even knowing you're doing it. It may be that there is an element of depression beginning, which again can make everything seem worse too. Medication wise, it's now recommended in lots of conditions to take 8 paracetamol per day everyday. Tramadol is fine if you feel an effect but like all painkillers your tolerance to them can cause them to be less effective over time. With centralised pain it can help to take a low dose antidepressant or anti epileptic drug to turn the signals off, but this is normally monitored by a pain specialist to check dosage and see if it changes the pain in any way. Exercise of any kind is also recommended, so if you could swim it would be a good low impact exercise, or Pilates is also now being suggested by lots of pain specialists but take it slowly. Don't be tempted to start to use a walking stick in the hope of getting some help, as you will change your posture which can make everything worse. I would keep telephoning the pain clinic and find out if you were discharged, if so ask for the consultant's secretary's phone number and tell her that you weren't suitable for the programme so you need to see the consultant again for advice. If it comes to it and you need to be referred it will take you longer but your GP should oblige. It's just extra stress that you don't need right now. I would maybe try a different tactic and ask for support to manage the pain, explain that the tramadol is less effective and you feel like your not handling it as well as you have in the past. Tell him/her that you are struggling to remain at work, but you're determined not to let it beat you...if you ask them for something they can do, rather than to cure the pain/find the cause, they will prob be happier to help as it's something they know how to do! Mention the things suggested on here...there are acupuncturists who work in the nhs so ask for an approved practitioner rather than just going online and looking (it may be something the pain clinic can help with if GP can't). I would urge caution with any alternative medicine that involves touching you, as the length of time these people train for is very short compared to healthcare pros, and their ability to foresee problems/injuries is understandably more limited. I'm not saying the practices in general don't work, but you have to be careful, there is much less regulation and supervision, also it's very easy to print yourself a certificate from the internet that says you're qualified.

I hope my essay(!) has helped a bit and not been too confusing, I think you have clearly been coping very well up until now and everyone needs some help at some point. Try to focus on what you're achieving every day in spite of pain. You are walking, you are working, even if both are hard to keep doing, you have done amazingly. You clearly aren't a burden to anyone, and I'm sure your family and friends would be the first to say that! Take care xxx

[lilcherub in reply to SazRah]

Thanks for the reply sazrah, I will mention these to my GP when I see her next and see what she says. I understand what you mean :). Thank you again x