See previously asked Questions and Answers

Posted: 26th June 2019

Michael asked

I am suffering from neuropathic pain my GP doesn't know the cause and none of the medications have been effective I am now getting desperate. Please help me.

Hi Michael

Thanks for sending me your question.

I’ve not experienced neuropathic pain myself, but I know of many people who have. It’s also a tricky one for healthcare professionals as well.

People with neuropathic pain have told me medication alone isn’t that helpful and they needed to learn other pain self-management skills, to get them back on track.

I know many people with neuropathic pain have found attending a pain management programme very useful and I know you have a good one there in Dorset Please ask your GP to refer you to it.

In addition, if you would like to call and have a chat with one of the team leaders, while the referral is being processed, you could ring 01202 308069 (if you live in East Dorset) or 01305 814015 (if you live in West/North Dorset) and speak to one of our Team Leads.

I hope you find this information useful.

Peer Supporter

Posted: 28th February 2019

Vicki asked

I suffer with terrible neuropathy pain in my feet caused by Diabetes. My GP is not helping. What can I do?

Hello Vickie

Thank you for your question

I have bit of an idea of the pain you’re experiencing, because I have arthritis in both feet and at times it can be excruciating.

I think GP’s are limited with the knowledge they may have regarding certain pain conditions.

Below are some suggestions that could be helpful:

I hope you find this information useful and please let me know how you get on.

Peer Supporter

Posted: 6th November 2018

LJ asked

I suffer with Fibromyalgia and have heard a few people say they have success with the Unlearn Your Pain programme. I live in Dorchester, can you tell me if this is available in my area (I know several have done it in Bournemouth). All of the information online sounds really good, Dr Schubiner makes sense! I only handed my questionnaire in today, is there a long wait to see the Pain Service and do you know if I can access this programme privately?

Thank you in advance. LJ

Hi LJ

Thank you for your question

I don’t live in Dorset, so unaware of the Unlearn Your Pain programme, but asked the team and it seems the 'Unlearn your Pain Course' is a book by a man called Howard Schubiner. He is from the States and runs courses in the USA but no one is aware of any in this country, certainly not in Dorset.

Could I suggest you take the information to show your GP or other healthcare professionals you see and ask there opinion, as to whether the Unlearn Your Pain programme would be suitable for you. What about asking Fibromyalgia Action UK (FMA UK) and ask them, what do they think of the programme and if others have been on it?

Regarding attending the Pain Service, their courses are GP referral only, people would be assessed in the service by one of their team (at present a waiting time of approx. 12 -16 weeks) and then put on the appropriate fibromyalgia pathway. This may include a course of one day a week for 8 weeks, or you might be offered 1-1 work with a member of their multidisciplinary team, it all depends on what you’d like to ‘learn’ or work on and they will help set up a bespoke plan to help with your recovery.

I hope this information is useful

Peer Supporter

Posted: 27th February 2018

Adam asked

My daughter had an operation to correct scoliosis last year, she is still suffering with severe pain on a day-to-day basis. We keep going back to the GP and the surgeon team asking for help, but we aren’t getting anywhere. We are now paying for a private physiotherapist who has said that maybe the next step would be pain management.

Hi Adam

Thank you for your question.

Yes it sounds like attending a pain management programme would be useful. I attended one way back in 1996 and the programme gave me the skills, tools and most importantly the confidence to manage the pain myself.

There is one in your area and here is a link with some more useful information about it.

To get on the programme your daughter’s GP or Pain Doctor will need to refer her. Details below:

Dorset Community Pain Service, Poole Community Clinic
Shaftesbury Road
Poole
BH15 2NT

Their news telephone numbers are: Direct Dial: 01202 308069 and Direct Dial: 01202 308067.

Please note though Adam, that the Dorset Pain Management Programme is for people who are over 16 years. If you daughter is younger than 16, there is a pain management programme in Bath she could attend.

Here is the link for more information and don’t forget to discuss either option with the GP.

I hope this information is useful and please let me know how your daughter gets on.

Peer Supporter

Posted: 7th September 2017

Thomas asked

Could you help my husband? He had heart attack January 2016. He was diagnosed FM January 2017. He is 68. He was looking forward to spend pleasure time after retirement. He suffers from various symptoms especially headache, heart pain, abdominal pain and insomnia. When he exercises his symptoms get worse and more symptoms are appearing so only he just manages to walk around the house. He is getting less and less able to do things for himself.

He feels so sad and very unwell everyday and hates his life.

He was very active before illness. His life has completely changed. His GP has prescribed pregabalin25mg but he feels so ill. He is very sensitive to lots of medication. He tried various antidepressants, CBT, mindfulness, EFT and changed his diet etc.

He is desperate to get better (manageable). His GP told us she doesn't know what's next. I can't just watch him going down the hill. Do FM people have heart pain everyday so bad (he has been checked  by cardiologist)? Should he take more pregabalin up to 300mg which Dr recommends. Is there anything he can try? Please give me some advice.

Kind regards

Hi Thomas 

Thanks for your question.

Managing persistent pain can be tricky and to manage it, we need to learn various types of skills.

Many of these skills are taught when someone attends a Pain Management Programme (PMP). You have an excellent PMP there in Dorset, run by dedicated healthcare professionals and here is the link for more information about the Service and how you can get your husband onto the PMP.

As always with exercise, it is always best to get the right exercises from a Physiotherapist. With exercise is it also best to start off gradually and increase at a pace that suits your husband.

Regarding your husband feeling low, he could ask his GP to refer him to Talking Therapies. They have trained people to deal with problems like feeling low etc.

I’m not a medical person, so I cannot talk about medications and as always, its best to speak with the GP or Pharmacist about this. All I can say is medications affect people differently.

Please let me know how your husband gets on with attending the Pain Management Programme

If you would like to speak to one of the Pain Team team for further advice, please call 01202 308081 and leave a message. 

Peer Supporter

Posted: 20th July 2017

Debs asked

I have fibromyalgia. It has taken my old life away and I find it hard to come to terms with this horrid condition. Do you think a pain clinic could help me manage the pain and my sadness. How do you get referred to a pain clinic? I live in Dorset.

Hi Debs

Thanks for your question.

I get many questions about fibromyalgia, so you are not on your own. Last week in Northern Ireland, the healthcare authorities recognised fibromyalgia as a long-term health condition. Can I suggest attending a pain management programmes there in Dorset would be useful and here is the link for more information.

Let me explain more how a Pain Clinic and Pain Management Programmes work. The Pain Clinic mainly manages pain via medication, treatments or procedures. Pain Management Programmes are multi-disciplinery programmes. They provide the patient with pain self-management life-long skills to manage their pain. I went on one in London in 1996 and it really turned me around. Here is a link for more information.

Here are other useful links…

I hope this information is useful and please come back to me, if you need more information.

Peer Supporter

Posted: 15th May 2017

Lou Ann asked

My daughter has chronic pain, but because she is 15 cannot be referred to a pain management program. What advice can you offer to an "almost" adult to help her manage her pain? She has just had to start using a power chair to get around school. She used to do gymnastics, trampolining and dancing, so this current inactivity is driving her mad! What sort of exercises can I get her doing that will keep her active, but not be too much? Any words of wisdom would be much appreciated. Thank you for your time.

Hi Lou Ann

Thanks for getting in contact. Yes there isn’t generally a lot out there for younger people with pain.

But here is some good news. There are two pain management programmes for younger people and both based in Bath. Remember your daughter will need to referred to the programme by her GP or local pain clinic.

I went on a pain management programme back in 1996 and it was the only thing that turned me around and put me back in the driving seat. They are life long skills which I’m can use throughout my life.

I hope you find this information useful and your daughter is successful getting on one of the programmes.

Please let me know how she gets on and if I can be of further help.

Peer Supporter

Posted: 13th January 2017

Catherine asked

'If your pain went away today what would you do tomorrow?'
Is this a fair question to ask patient in long term pain?

I am thinking of using it in this context: I was thinking of asking patients to complete a functional outcome scale but starting with the question:

'If your pain went away today, what activities would you do tomorrow?'
'How confident would you be on doing that activity at the moment (rate out of 10)'

I am naturally very interested to hear your view and opinion,
Thank you for your time.
Catherine

Hi Catherine

Thanks for your question.

Sounds like a good question.

A good subsequent question might be

'And if you could put it into practice, how would your life change?'

Try it out and see what feedback you get.

Peer Supporter

Posted: 22nd December 2016

Sandra asked

I am under the pain clinic in Poole, and they have proved to be one of a very few people who actually seem to understand this horrendous pain associated with this osteoarthritis in my spine knees and hands from which I suffer.

I take an amazing cocktail of drugs which my GP prescribed and which do help, sorry to go on he is extremely understanding but unable to do much else.

I manage my pain well I think but sometimes (as at this moment) when I am in the middle of an quite awful flare up, it feels that life is not worth living.

Can you recommend anything to help stem this despair? I am 66 and have suffered from this condition for the past 12-15 years with it continually getting more intense.

I apologise for sounding so self-centred but I really feel at the end of my tether with all of this. I have a husband who is great but it is very hard to explain to anyone how awful this is. Can you help with any tips before I go right over the edge?

Hi Sandra

Thank you for your question and sharing your journey.

Here is some good news for you. Flare Up’s as you call them (I call them setbacks) don’t tend to last for a long-time. They are usually caused where we have overdone our daily activities. These happen when we:

  • Haven’t paced ourselves
  • Feel pressure to do things from others
  • Pressure ourselves to get things done (we tend to be overachievers)
  • And even the weather can play it’s part as well

The main message is to have a setback plan and I made a short video about how to organise one here.

Pacing is a really key skill to learn setbacks and I made a short video here about it. By the way, even I have still have setbacks? Why? Because I’m an overachiever.

I also have osteoarthritis in my back, knees and hands. Osteoarthritis is really common and not in older people like us, but also younger people as well. Here is some excellent information about it here via NHS Choices.

Personally I don’t take any medication for osteoarthritis and I do daily stretching and exercise to keep the pain levels down. Check out the Arthritis Care link for more information about how keeping active, stretching and exercise is important.

One last useful local link for you is the Dorset Pain Service Information advice and guidance. Take a tour around and see what information is useful for you.

Peer Supporter

Posted: 7th July 2016

Kathy asked

I don't know if you can help me. I have lived with chronic pain in my arm after shattering the elbow 14 years ago and have now had pioneering surgery and am coping well. However, 15 months ago I started having a problem with my knee which turned out to be retro patella chondromalacia with cysts and arthritis which has been very painful but the hospital haven't helped – the Doctor I saw for the diagnosis said I was fat and that was why there’s nothing he can do. I am due to see them again in late August (which I am obviously not looking forward to!). Now 3 weeks ago I started with chronic pain in my back and my knee physio thought I had at least one prolapsed disc and I went back to my GP who confirmed this and said it was probably caused indirectly from my bad knee. I have been given more medication and referred for physio for my back (which could take 8 weeks). I am starting to feel a bit better. I went back to work today after getting a fit note for phased return gradually increasing hours without actually speaking or seeing a GP. My employers have sent me home stating they don't think I'm ready as I shouldn't work on that combination of drugs and should get the GP to do more? I just don't know what to do anymore; pain medication is a way of life now and I take paracetamol, naproxen, tramadol, lanzaprazole and amitriptyline to the full doses each day with the new medication being diazepam and morphine added in - although I am now managing without the morphine. Is there anything that may help me and can my work send me home disregarding the note that says I'm fit?

Hi Kathy

Thank you for your question.

Managing pain is tricky. Managing pain, work and all the other commitments can make it even trickier. I’ve been back at work now since 2000 and still have to learn and find new ways to manage life and work, as I’m getting older.

Doctors and healthcare professionals don’t come out of a jelly mold and I’ve met my fair share whose communication skills have been wanting. We also need to remember they are human as well and as we do, they can have off days. If you don’t feel confident about see this particular doctor, then ask to see another one. It’s vital that you have a good working relationship with your healthcare professional.

Regarding being overweight, I was myself back in my pain days and still am, if I’m honest, but I knew I had to lose weight, because it was adding to my pain and problems. It’s best always best to seek the help of a nutritionist who can advice you. Here is a link to NHS Choices and Healthy Eating which I’ve used myself.

Managing pain doesn’t mean we only need to learn one or two skills. Yes we need to do regular stretching and exercising and we also need to learn other skills like…

  • pacing daily activities (including work)
  • relaxation
  • communication skills with our family, friends, work colleagues and of course our healthcare professionals
  • having a setback plan if something goes wrong

The good news is, you can learn these skills by attending a Pain Management Programme and you have an excellent one there in Dorset.

Here is a link for how you need to get referred to a pain management programme.

I hope this helps and let me know how you get on

Peer Supporter

Posted: 5th April 2016

Marisa asked

I saw a physio last week and she said you may help with other advice. I have put a hoist in my husband's people carrier and want to get the car zero rated for car tax. This will mean taking the zero rating off the other car in my name and transferring it. I gave back the manual chair that went with this car as my husband can't push it any more as has pacemaker, and I can't self propel. I now use large an electric reclinable/tilt-in space chair through Motability. I’m not entitled to a hospital one as on good days I can walk a little. I am hesitant to approach DVLA with all of this as before, when tested at disability centre to see that I was OK to drive, their positive result somehow triggered some amazing reaction and I lost my license and spent a month getting it back! Also, my pain level goes right up when trying to deal with major bureaucratic issues. Do you know of a disability adviser that could help me with all this, I mentioned to someone in last week that in London, there was one attached to GP surgery and i didn't think there was any such down here, but she said there were and you would know?

Hi Marisa

Thank you for your question

I’m not local to Dorset, so I’m unaware of Disability Advisors in your locality.

I always think the best starting point to look for information is the Citizens Advice Bureaux (CAB). Here is a link to the main contact details for the CAB offices in Dorset.

Dealing with government and social care organisations can be stressful and in turn it can increase our pain. I always think this is useful and what I call following the 3P’s…

  • Plan (what needs to be done)
  • Prioritise (what really needs to get done in an order to suit you)
  • Pacing (break down activities into manageable sections to also suit you)

I hope this helps and good luck

Peer Supporter

Posted: 5th April 2016

Susan asked

I received an inter-caudal steroid injection in early July and was told that this could be repeated at 6 monthly intervals. I know that I am 'on the list' and that there are staff issues but I have now been waiting for nearly 9 months, I can now only walk about 50 yards or stand for 2 minutes without chronic back pain. I have watched the videos you recommended to another question and several others but feel at my wits end. Any other ideas?

Hi Susan

Thank you for your question.

Having lived with back pain myself for the past 35years I know about the challenges it can bring. I accepted some years ago I would have to learn to live with my back pain and for the past 20years I have done just that. Attending the Pain Management Programme in London got me back on track.

Was it easy? For me no, because I’m not a quick learner, but it is possible and if I can do it, then I know you can.

The main challenge is to be patient and learn new skils (and use still some of your old ones) to manage your back pain. Some of these new skills could be:

  • Pacing daily activies (this really important as most people get stuck on the Boom and Bust Cycle).
  • Stretching and exercises
  • Relaxation
  • Teamwork with your healthcare team

and of course, being patient.

Can I also suggest you attend the Pain Management Programme there in Dorset. Usually people have to be referred by their GP, so ask them for one. I think you will find the programme really useful.

Please let me know how you get on

Peer Supporter

Posted: 5th February 2016

John M asked

I have suffered with back pain since I was about 22 years old, I have been to been to back pain classes and had pain relief injections many times either in hospital or through a private doctor.

I hardly ever took time off work, but continued to work. Eventually I was told it would be better to find a different type of work but as I was by that time I was in my sixties the chances would be nil. I do exercise at home but find that I can only work on my upper body. For the past five and a half years I have been receiving two facet injections and an epidural at Poole hospital. But since the conversion to DCPS I received one treatment and was told this would continue every six months. My last injection was on the 11/6/15 and I am still waiting so now I am now getting very anxious having been told repeatedly I am on the list.

Hi John

You journey sounds a lot like mine as I had back pain at an early age as well.

I like to always suggest to take a look at this really useful video called: Understanding Pain in less than 5 minutes, and what to do about it!

Managing our pain is like learning a new skill, like learning to drive a car or a new language.

The new skills you and others with pain need to learn can be:

  • Acceptance - that your pain could be with us a long-time
  • Get involved and build a support team to help you self-manage your pain
  • Learn about the boom and bust cycle so don’t over-do things
  • Pacing your daily activities so to avoid falling into the boom and bust cycle
  • Setting goals and action plans - so you are planning for the future and your recovery
  • Learning how to stretching & exercise help reduce your pain and also to increase our fitness
  • Learning how to deal with sleep problems and getting back to work (paid or voluntary)
  • Track your progress - so you can see how your doing and tweak your recovery programme
  • Have a setback plan, so if things go wrong and your pain increases
  • How to find and use useful resources - locally or on the Internet

These may seem a lot, but the good thing is you could learn them if you attended the Dorset Pain Management Programme. Find out how you can be referred. It is really easy.

Managing pain also requires patience, which for many of us isn’t in abundance. I’m still learning that one.

I will pass on the message re injection appointments to the DCPS.

I hope you find this information John. Please keep in touch and let me know how you get on.

Peer Supporter

Posted: 29th April 2015

Linda asked

I have long standing (sorry for choice of words!) pain in both my right and left side - through the gluteal muscles and into the legs, knees and feet - and long term in the muscle above the pelvis on the right side. It is acute on the right side at present… the muscles in the right buttock are extremely stiff and painful and as I work as an HCA in a care of the elderly establishment at present, I'm having a particularly difficult time. I have an osteopath I see as often as I can afford, but this problem is not getting any better. I use hot/cold packs, stretches recommended by a physio I saw after the birth of my son 17 years ago, and take hot baths to ease the muscles after work (12 and 7 hour shifts, predominantly on my feet).

Sometimes the pain through the sacrum is very sharp when treading/walking, and constant through my heels and base of the foot/toes.

I suffer from Fibromyalgia, so periods of prolonged pain can be a nuisance and exacerbate the condition... I cannot take time off as I don't get sick pay. I take gentle walks, keep mobile (sitting is horrible) and practice yoga when time allows, but stick to my physio excersises at the moment.

Any ideas? Many thanks :)

Hi Linda

Thank you for your question.

Your story sounds very similar to mine. I.e. Trying out different things to help the pain but still struggling.

What seems to have helped me and many others in a similar situation is to attend a Pain Management Programme (PMP). There is one in the Dorset area and to attend people with pain have to be referred to it by their GP or Pain Clinic.

Managing pain can be tricky and not always straight forward. We need various extra skills and knowledge. On a PMP they provide those extra skills people need to self-manage their pain more successfully. Here is some more information about PMPs and what they have to offer.

On the Dorset Pain site there is lots of information about self-managing and also on the Pain Toolkit.

Take your time learning new skills. Learning pain management is more of a marathon than a sprint, but you will get there.

Keep in touch and let me know how you get on.

Is there anything else or information you need?

Peer Supporter

Posted: 24th April 2015

L asked

Should I use Gabapentin for my pain?

Hi L

Thank you for your question about Gabapentin.

Please visit the British Pain Society for more information about Gabapentin.

It's also useful to discuss medication with your GP, Pain Doctor or Pain Nurse.

Peer Supporter

Posted: 23rd March 2015

Jenny asked

I have chronic back pain and have tried in the past doing exercises in a group with the trainer in the pool at Littledown, Bournemouth, which were very helpful at the time. Now I have a lot more pain and I asked the GP to refer me back to hydrotherapy in the pool but I am finding even getting undressed and dressed again is more exhausting than being in the pool for a short while. Is there any other form of exercise which isn't particularly hard on land that you are aware of? Exercise is particularly important even with a bad back.

Hi Jenny

Thanks for your question.

Exercise is important for us, but it can also a tricky one. I don¹t knowabout you but in my pain days just getting active, stretching and exercise was scary and also very tiring.

When I attended my pain management programme they really emphasised to pace the way I stretched and exercised as I tended to overdo it, which of course increased my pain and tired me out. Once I got the knack of it, my pain levels began to reduce quite a lot.

Do you stretch before you exercise? If you don¹t, its best to. What do cats and dogs do when they get up from sleeping or a nap? Yes, they have a stretch so they are preparing their bodies for movement. So we need to take a tip from them.

I think its always best to get advice from a Chartered Physiotherapist who can show you the right stretches/exercises for you.

I stretch and exercise everyday and when work permits I go to the gym in the mornings to exercise and tone up my muscles. I learnt many years ago, a stretched and tone muscle feels less pain.

If getting dressed etc is difficult perhaps work on land-based exercise separately first. Also this site has tips regarding pain self-management.

If you are attending the Dorset Pain Service their therapy assistants can assist by initially to help you get back to swimming.

The key message with getting active is to take it steady and pace yourself.

Let me know how you get on.

Peer Supporter

Posted: 16th February 2015

Jo asked

Hi, I think I'm going to be referred now to the pain team as the surgeon in Salisbury that I had been referred by my GP, has said at present that there is no need for surgery as there is no cord impingement. How can I be absolutely sure, with no possible further x-rays and MRI's that my condition won't worsen, and that by exercising now, after being told not to for nearly four months, this will not cause further damage? I'm probably my own worst enemy, when having a good day I'll attempt some stretches or normal day to day household chores (putting washing in machine) and my god, next day I really pay. I suppose my main question is, can I be absolutely sure the surgeon has got diagnosis right?

Hi Jo

Thank you for your question.

Over the years I have spoken to many people with pain and some needed surgery, but many don't. It seems you are one of those who don't, so the next thing to do, is to learn pain self-management skills.

In the Pain Toolkit (See page 7 of the Pain Toolkit attached) we mention how many people get, or become stuck in the boom and bust cycle.

Also I'm guessing you probably can identify with these three questions below

  • Do you do more on good days and less on bad days?
  • Are you an over achiever - doing more than you have to?
  • Are you a people pleaser? Do you have a problem saying NO when when you are asked to do things?

How many did you say yes to? I'm guessing you definitely said yes to two.

These seem to be the three main traits we have and yes, me included. We just have to learn how to modify how we do things.

Reading your question again, it sounds like you're not pacing yourself. Pacing is taking a break before we think we need to and this is a really important skill to learn. We tend to stop doing something when our pain starts/begins and this isn't pain management. We need to stop before our pain starts See page 13 examples of pacing daily activities in the Pain Toolkit.

Finally, no one can get something completly right, and I can see your worried that the surgeon may of made a mistake. I know lots if health care professionals, including some surgeons and like everyone else, they are not infallible. Try and accept their decision and really get stuck into learning and practicing your pain management skills. I know in your area there are fantastic health care professionals at the Pain Clinic who can help you with learning more about pain management. They can give you the information, but you have to do the work. There is excellent information on the Dorset Pain Service site.

Please keep in touch and let me know how you get on

Peer Supporter

Posted: 27 January 2015

Pepsi asked

I was involved in a car accident over a year ago; I am still suffering with terrible back pain. I suffer with bad anxiety, is this why it's not getting better? Do you have any advice?

Hi Pepsi

Thanks for your question and sorry to hear about the accident. It seems people often experience spine problems in these types of accidents.

I can identify with you so much about being anxious as I was too back in my pain days, and I used to despair that my pain was always going to be at a very high level. When I was anxious, I felt as if my life was out of control, and really worried about the future, and this is why I included it in the Pain Cycle.

You can you see it at the bottom of the cycle?

Some pain can totally go away after an accident, and some will just stick around. You don’t say what you are doing now to self-manage your pain at the moment, but I’m guessing you're taking pain medication. That can help, but it's not always a long-term answer.

If your pain is going to stick around, then it will be really useful to learn some self-management skills. If you not sure what self-management means, take a look at this excellent video by Know Your Own Health called What is Self-Management?

It’s always useful to find out what pain is, where does it come from, and how it affects people. This is a really good video called Understanding Pain in less that five minutes.

I know you will find it really useful, as many others around the world do.

The good news is, most pain does get better, and that’s where you come in. Managing long-term pain is like learning a new skill, like driving a car or learning a new language. Some people learn fast, and some don’t (I’m a slow learner). Healthcare teams can show you what to you, but you have to do the work. I still have to work hard at managing my pain, and I do this mainly through pacing my daily activities and stretching and exercising.

Can I suggest you ask your GP to refer you to the Dorset Pain Service.

Their pain management programme will give you the necessary skills to manage your pain, and help put you back in control, and then also help you to feel less anxious. How does that sound?

Please keep in touch and let me know how you get on.

Peer Supporter

Posted: 8 January 2015

Marguerite asked

Having just endured yet another sleepless night due to pain, can you tell me how far the current pain injections programme is?

Hi Marguerite. Thank you for your email. I am only able to answer questions about pain self-management so unable to answer your question about pain injections.

Many people with pain have problems sleeping, myself included. There is a good link on the Dorset Pain Site, which has information about Sleep which could be helpful.

I'm am not a local to Dorset, and unaware of any Pain Injections Service, so could you contact Sarah Mumford on 01305213070 for more information.

Peer Supporter

Posted: 15 December 2014

CJ asked

I've suffered with chronic back pain for 14 years, just been told they think its neuropathic and that it won't get better and that I need to learn to manage it with meds and lifestyle?!

But I think I manage the best I can in the circumstances and unsure what I can do differently. Any advice as I’m currently really struggling?

Pain as I’ve come to understand is like a finger print. They are all different and how we manage it, is also different. Interesting you have been told your pain will not get better. Perhaps it would have been more useful if you were told your pain has become persistent, and need to learn some pain self-management skills to help you feel you’re back in control.

Back in the early 1990’s when my back pain was out of control, I was on a constant search for something, or, someone to take my pain away. After I heard a speaker (at the back pain support group I was running at the time) talk about ‘taking more responsibility' for my back pain and learn simple pain management skills, this message seemed to resinate with me. I guess for me, learning to accept pain was going to be an unwanted passenger in my life, and I had to learn how to get along with it. But how was I to learn how to get on with it? That’s where I knew I needed some help and also need some extra pain self-management skills.

I tracked down a pain management programme, and in 1996 I attended the INPUT pain management at St Thomas Hospital, London. The programme provided me with the simple skills to learn how to manage my pain, and get back more control of my life. I learned how stretching and exercising could actually reduce my pain, along with learning how to pace my daily activities. Pacing was really important to me as I used to allow my pain to tell me how much I did each day.

It was really important to find out how pain does work and affects me and others. On the Health Talk On-line website you can see, read and listen how others with pain live with and manage their pain. The Understanding Pain in Under Five Minutes on the Dorset Community Pain Management site is really useful to find out how it works. Its simple to understand. Also, have you seen more information about Neuropathic Pain from Patient UK?

Can I suggest you contact the Dorset Pain Service 01305 213040 or email dorset.cps@dhuft.nhs.uk and see how you can enrol on their pain management programme. But before you do, it would be useful to ask yourself, are you ready to take more responsibility for your back pain, and learn some new simple skills? If you’re not, still keep the contact details, and then get in touch with them, when you are.

I hope this is helpful and happy to support if you need more help

Peer Supporter

Posted: 13 November 2014

Roy asked

I am sure I have fibromylgia and have now been referred to the pain clinic. My question is that not only do I get all the joint/muscle pain, I also get a lot of pain down from my throat to my chest which i think is caused by acid reflux have you any tips on how to deal with this?

Thanks

Thanks for your question

I'm not a medical person, so I’m unable to answer your question about throat pain which goes to your chest. But I have spoken to many people with Fibromyalgia (FM) over the years, and they tell me they share the same problems as many other others do with joint pain.

Problems as mentioned in the Pain Cycle.

It may be worth asking for a specialist FM leaflet from Arthritis UK through their website or looking this up on Wikipedia.

This has interesting information on the involvement of Substance P, which has an impact on so many systems of the body, including the gastric system which may possibly explain why people with FM have more symptoms than just joint pain.

Like many other pain problems, we need to learn pain self-management skills. People with fibromyalgia tell me the have found stretching/exercising, pacing and other pain self-management skills helpful to reduce their pain, so perhaps these are some skills you can learn with the help and support of your healthcare team.

I looked on NHS Choices website, and see there is lots of useful information on it about fibromyalgia.

When you attend the Pain Clinic, it would be useful, before you attend, to make a list of the problems you are having, perhaps some of those listed in the Pain Cycle, and choose the top 2-3 you need help with.

Please let me know how you get on.

Peer Supporter

Posted: 3 November 2014

MEG asked

I have heard that acupucture is becoming more recognised by medical professionals as having value for pain relief. Does the Pain Clinic offer acupuncture? Thank You

Hi Meg

Thanks for you question. Yes, acupuncture is used by many health care professionals to support people with persistent pain. There is an overview (what it is and how it works) about acupuncture here on NHS Choices.

I understand many health care professionals use acupuncture to help people with acute pain, to help and support people quieten the pain, and to help with mobility. I also understand it is used for people with persistent pain as well.

I had acupuncture in my early days of back and head pain and it sort of worked and didn’t. I think I relied on it too much, and was looking for it take away my pain totally, and it didn’t. For me, when I started to stretch and exercise regularly, and pace my daily activities (after attending a pain management programme) my pain began to reduce, so I stopped using it. Talking to many people with pain over the years who have used acupuncture, it seems to work on some people and not on others.

I understand the Pain Clinic doesn't offer acupuncture as they have not been commissioned to, but GP’s and some Physiotherapist in Dorset do offer it on the NHS, so perhaps ask your GP Surgery if they offer it for their patients. Also some charities in the east of the county offer it at reduced cost privately.

If you get stuck finding an acupuncturist, please contact Meherzin Das (from the Pain Clinic) on 01202 448670, who could you find an acupuncturist in your area.

I hope this helps, but come back to me if you need to ask another question.

Peer Supporter

Posted: 20 October 2014

MEG asked

I have been suffering for nearly a year with the symptoms of Pudendal neuralgia. Although I have been unable to find a specialist for this condition.

I was prescribed Gabapentin and Amitriptyline the pain did not improve but the side effects were bad so after a few months I had to give them up. Could you tell me if the pain clinic is familiar with this condition? If so what treatments are available.

Thank you

Hi MEG

Thanks for your email and question.

All Pain Clinics are aware of painful health conditions like Pudendal Neuralgia. It would be useful to ask your GP to refer you to the Pain Clinic and they can advise you regarding what treatments are available and also what you can do to self-manage it.

Peer Supporter

Posted: 18 July 2014

PJL asked

I have ongoing pain following an inguinal hernia repair last August and am in considerable discomfort and my lifestyle is very constrained. I am on tablets provided by the doctor which help somewhat, topped up with Ibuprofen and Paracetemol. Is the Community Pain Service able to help please?

Hi PJL

I have discussed this with the clinicians and they have confirmed that the service will definitely help you in the best manner possible. Would you kindly call our Admin team on 01202 448670 and they will advise you on how to organise a referral.

Peer Supporter

Posted: 17 July 2014

Robert asked

I am a previously very fit 70 year old man who, two years ago, came off his racing cycle when out training and sustained a incomplete spinal cord injury C3/4 resulting in Central Cord Syndrome. I suffer greatly with neuropathic pain (intense burning and buzzing throughout my body).

I have tried all the drugs listed in the NICE guidelines but sadly to no effect. I did try CBT in the early days but gave it up as I just got worse and worse and could not concentrate on the programme given to me. Am I a hopeless case now? Should I ask to be referred to the pain clinic or is there nothing left to be done. Admittedly I have acceptance problems as my life was all about being fit and physical. I do walk but with some difficulty. My left side is the weaker of the two and I do suffer with some left sided spasticity and whole body spasms mainly in the morning. I am still having physio and it has improved the situation greatly with regard to mobility. Thanks for any help.

Thanks for your email and for sharing your story.

Can I say first, you're not a hopeless case, and none of us are. Persistent pain seems to wear people down, and we can lose our confidence.

Acceptance does play a big part in managing pain. I also had a problem with this at first, but I learned that acceptance wasn't about giving up, but that pain was going to be an un-welcomed visitor in my life, and I had to learn to get along with it. As soon as I did this, things started to drop into place, and for me, my pain became more controllable.

Yes, I do think it would be useful to ask your GP to refer you to the Pain Clinic as they have expert professionals there to first see how the pain is affecting you, and also provide useful pain self-management skills you can do for yourself. CBT is really useful for managing pain, and I hope you revisit it, as I have over the years.

By the way, I have just bought myself another bicycle and for two reasons. 1) to get fitter 2) to see the wonderful countryside where I live. I remembered to pace myself, because I know I'm an overachiever and want to do more than I could or should. So each time I have cycled a little further. I hope you return to cycling, if you haven't already. It could be also useful to take a look at what other interests you had, but now avoiding, or let go of because of your pain. This is where CBT could come in handy, and where it can help you develop or build and action plan to return to them, with a little modification.

I hope this helps and please keep in touch to let me know how your getting on.

Peer Supporter

Posted: 4 June 2014

Sheila asked

Can you help? I have constant pain, sometimes acute down my left leg.

Hi Sheila

Many thanks for your email. The information you have sent about ‘sometimes constant acute pain going down left leg’ doesn’t really tell me much. So would you mind sending me some more details as there are many roads into managing pain:

  • Firstly, have you seen a pain specialist doctor already?
  • Do you understand what this pain is all about? Have you seen this video?
  • If you have, do you have the right exercises?
  • Is pain effecting your sleep or other problems in as in the Pain Cycle?
  • Do you have the right support around you - why don't you sign up to the patient platform, the pain service can register you and send you an access code if you're not there already?

Peer Supporter

Posted: 7 April 2014

Judith Watson asked

In view of the cost to the economy and the significant cost to the well-being of the individual patient, where pain can lead to serious depression, do you think that GPs take pain seriously enough or are they too slow to refer their patients for clinical help including Pain Management?

Thank you for your question. Yes, I do think GPs take pain seriously, but as I'm finding out, when they are being trained in Med School, pain management, and pain self-management is not very high on in the curriculum. Considering that pain is so prevalent for them each day in their surgeries, I think most GP's will be struggling.

Regarding referring, I'm regularly told that every other GP appointment is pain-related (chronic pain accounts for 4.6 million GP appointments each year), so if they did refer most people for clinical support, could the clinical pain services manage with so many people coming their way? Most of my time these days is spent providing Pain Toolkit workshops and materials for health care professionals to support people with pain to self-manage. But I have not forgotten people with pain, and also run half-day workshops for them. Does that answer your question, and is there anything else you need?

Peer Supporter

Posted: 22 March 2014

JG asked

My doctor said I need to exercise when but when I do, my pain starts. When I started to stretch and exercise my pain increased, but it soon decreased once my joints became less stiff. Should I carry on?

It's common when someone starts to exercise - pain can increase your joints may be stiff. Think of it this way, if you haven't opened a door for some time, it will creak. Joints that haven't been used are likely to creak a bit, but it will pass.

Don't forget to stretch before exercising. Remember what cat and dogs do when they get up after lying down or sitting. Yes, they stretch - they are preparing their body for moving. The same applies to you. Another common question is what exercises should I do? It's best to see an Physiotherapist who is experienced in pain management and could guide which ones are best for you.

See Tool 8 for more information. Also see the Dorset Community Pain Service link about Improving your fitness.

Peer Supporter

Posted: 18 March 2014

Katherine J asked

What is your biggest inspiration?

What a great question! I think my biggest inspiration are other people who because of their health problems (physical, mental or both) have learned to live with them, and lead what most people would call normal lives.

Recently, I watched the Paralympics from Sochi, and it was so inspirational to see so many people challenge themselves and others to do their best.

Peer Supporter

Posted: 17 March 2014

Meherzin asked

As Pain Champion UK 2014, What's the one tip you would give someone living with pain?

For most people with pain, we are not very patient with ourselves and others, this is because pain just gets on our nerves, and can make us very grumpy. So I guess the best tip is to be 'patient' with yourself. Managing pain doesn't happen overnight, it can take a long-term and it can be hard work. Think of it like this… managing pain is like learning a new skill like learning to drive or a new language. It can take time and practice. Oh and, by the way, make it FUN as well.

Peer Supporter