New user and diagnosed with chronic pain disorder

I saw a consultant a couple of months go and on the letter sent to my GP it says Chronic Pain Disorder. There is not much information online about this and I do not know anyone else to talk to. To have an anxiety disorder along side this has also not helped. Continually worrying about everything.

Ten years ago I started getting headaches and after a few years I was on anti depressants, over the counter pain medication and soon was on tramadol. I have tried not taking the pain meds to see if it gets better but nothing does. The doctors are not doing any tests they are writing me off with this diagnosis and its bringing me to tears.

This year has been the toughest yet. I am loosing the ability to walk. It was slight pain at first that got worse if I walked too far. Then it was just one leg if I used a walking stick to help reduce the weight in my hand. Now I can't get ten steps without being in pain, walking is getting harder and slower.

After working ten years and being made redundant, I decided to go to university and get a degree. It was easy up until this year. Now just getting from the car to the building is painful and I am not ashamed to say it. I am struggling to cope. Its just too much too soon. Who do I talk to? Who can help me? What should I be doing?

During all of this, I have had to claim some benefits and managed to get PIP for a year before they decided that I am no longer eligible. That was last week, I wrote them a three page letter highlighting there error but that was it. I have no more fight in me. I am slowing down, I am crying all the time. Living with my parents trying to work out how I can get things on the right path.

Does anyone have the same issues as me? Does someone have an alternative medical opinion that I can ask the doctors to test for? Any advice would help me a lot right now.

13 Replies

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  • Hi I am sorry that you are struggling. To be honest life with constant pain is a battle. Some days are better than others. This site has been one of the resources that has helped me get my head around chronic pain.

    painconcern.org.uk/resource...

    There is lots on there. I subscribe to thier Magazine too. Pain Matters.

    Also depending on your doctor maybe you could go back and ask them to explain. And where you can go for help. It's a journey.

    Good luck.

  • Hello Darrenseuk

    You have come to the right place for help, support and plenty of willing eears to listen to any problems you have. Not Doctors so no diagnosis but tons of eexperience.

    Firstly Chronic Pain Disorder isn't a condition. Sometomes known as a syndrome ot just sounds good but has little use.

    You know what pain is? Well chronic pain is when the pain doesn't go away or get considerably less after a few months. Sadly fo most it is a lifelong condition.

    But....can be managed with help from drugs, alternative therapy and self management. It is rare that a reason is found for why too many people get chronic pain. Scans and tests don't reveal much which can be so frustrating. We all want to know why we hurt and how to stop it.

    Have you been refered to the pain clinic or pain management? If not ask your GP for a referal. They can teach you so much.

    As to the here and now. it sounds like you are doing too much. With CP and over doing anything it results in more pain. It is wonderful you doing Uni but is there any way you can speak with your tutor to make adjustments? Maybe take longer over the course? Do a bi more from home if that helps you. Think on that and try speaking with him.

    Tou do learn to pace yourself which does cut down pain. Harrd yes cos everyhone wants to dash around when they feel good. Well dash slowly!

    Sorry this is a wee bit long. i alsways have too much to say! How do your parents feel? Are they supportive of you? Talk with them.

    Don't ever feel you are alone. Always someone around on this forum

    Hope this has given you something to think about. Come back if you need more.

    Pat x

  • Hi.

    Welcome!!!

    You have come to the right place, we offer each other: support,advise,help,info,talk/shoulders,being here for each other 24/7ish.

    I have also had my Chronic Pain for 10yrs, l have been given neumoreous meds which have been too weak or too strong.

    Yes things are tough & it can also look very difficult to control at times.

    Please let me know if I can help you out further???

    Steve.

  • Hi, Yes, you are in the right place. Check out Pain Concern's website and subscribe to the magazine; painconcern.org.uk/

    This may also be of interest (there are many other sources): spine-health.com/conditions...

    Also check out the Pain Toolkit: paintoolkit.org/

  • There is plenty of good advice here about coping with pain. As regards benefits have you thought of contacting the Citizens Advice Bureau, failing that look up the Benefits and Work website. For a small fee they will give you an answer to most benefit questions plus guides for claiming and challenging medical reports. Good luck.

  • Just because you have anxiety does not mean that your pain does not have a cause . Why have you had no scans? What sort of Consultant said you had CPS and what else did the letter say? You are entitled to a copy and to a clear explanation from your doctors as to what is going on. You have to, have to, push for information so you understand what is happening. Its your body, your life, not theirs. There are many things you can try once you know or have some clues, as to what your body is doing. Come back on here with more info please.

  • There often no alternative medical opinion. Go to the University music department and see if you can have a chat with the Alexander teachers that often help music students. You may get some help there.

  • Thank you all for getting back to me. It was touching to get so many responses to my post.

    I spoke with my pain psychologist on Wednesday and we have put a plan in place. He was concerned over my current medication could be very wrong. He is going to speak to someone who deals with medication and they will contact my doctor. I think they are concerned with the mix in medication.

    I have also asked to see a different doctor this time to get a second opinion about my treatment. I have also asked the University for counselling to at least get some of this anger vented. They surprisingly haven't replied to my email yet.

    DWP should have got my letter asking for a mandatory reconsideration on the assessment they have done. That was the final straw last week when they messed that up.

    Calceolaria: thank you for your comment. I had a brain scan about 5 years go, some blood tests and x-rays when things popped up and I had to go to a&e but nothing really since. They seem to have just written me off and that makes me feel very low.

    I know I need to be asking more questions, I just don't know who I should be asking. My parents are supportive but they have just got over my step dad having cancer (all clear last Friday) after operations and radiotherapy. I am also living at home at 34 years of age and I see all my friends moving out into their own places and I feel so held back. All I want is to get control of my life, body and mind so I can catch up with my friends.

    I am feeling a bit more positive today as managed to push a few things like actually getting a blue badge. Also in contact with the Red Cross to see if I can borrow a wheelchair for a week or two so I can see if it is an option to rest my legs more. I don't want to start spending more money on mobility aids when I can "try before I buy".

    Does anyone know how using a self propelled wheel chair effects your arms? Do you have to be really energetic or strong arms to go up slopes? I have never tried one and know that in the next couple of weeks, It may be the next logical step to take.

  • I'm sure propelling yourself, in a wheelchair, up slopes, would be extremely taxing, if not impossible!

    What is the reason for your reduced mobility and pain?

  • No one has ever told me. There was no incident. Started in November 2005 with headaches. Spread to neck, shoulder then jumped to my left leg. It's confusing

  • So are they saying the brain scan revealed something? If not, are they suggesting your condition is entirely anxiety related? Someone must have reached some kind of diagnosis?

  • The scan didn't highlight anything sinister. I was given a letter with different treatments and I have gone through them over the years. Nothing else was investigated. Hence the worrying.

  • I know that this is late in the game..but I am new to the site. Not sure if you have tried the wheelchair or not. It is definitely taxing on the arms. I would suggest a scooter- three or four wheeled. I have two four wheeled..One more rugged for outside and another for inside. I use the outside one for walking the dogs and the inside for shopping,

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