It’s been with me for so long that I forget who I was before my Chiari diagnosis. The pain-free, care-free days are behind me. I have enough pain meds too embarrassing to say. There are days …

“I hide the pain behind a forced smile."

Being diagnosed with Chiari malformation can be a stressful and confusing time. Learn about possible symptoms, treatments, recovery timelines & specialists.

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3. "Syringomyelia can be 'invisible' to those looking from the outside in."

Opioids for chronic pain are essential, but the CDC has decided to punish all people with chronic pain by denying treatment.

Awareness Arnold Chiari Malformation Disease and Syringomyelia as well because that’s also tied into chiari another disease to boot with chiari like we need any more to be associated with chi…

You have probably heard about 'Pacing' so many times before but are you pacing correctly? What is Pacing? Pacing is about maintaining an even level of activity throughout the day rather than trying to get everything finished in the morning and having to rest in the afternoon. Living with a chronic pain condition is very unpredictable, you never know how you will feel from one day to the next!. When you are having a 'GOOD DAY' you will probably try to get everything done in one go, this is very common as you don't know when you will have another one! Only to find you suffer a 'flare up' the following day so need to rest, or you carry on with an activity until the pain forces you to stop, does this sound familiar? we are all guilty of this! Which is why we need to learn about 'pacing'. I first learnt about Pacing when I went on a 'Pain Management Programme,' where it was covered quite extensively on week 1 and 3 spending a whole session on this subject, we were constantly being reminded about it by the staff, especially when we were taking part in physical activities, they would tell us to look at the clock and rest after a certain time. If you are not used to this concept it will seem hard at first to put into practice and feel like you are not getting much done but you will be glad you persevered in the end. I was recommended a fantastic programme by an OT to help me pace my time on the computer, as this is an area that I spend too long on! It is called Work Rave and allows you to set a realistic time that you can sit comfortably without triggering your pain, a message appears on the screen after that time telling you to have a short break, this is only for a few mins and doesn't mean you have to move away from the screen, you could stand up and stretch then continue, another message appears after a while which encourages you to take a longer break, away from the computer to do something else. You can click the skip button at any stage but you will probably suffer pain by sitting too long and it defeats the object of 'Pacing'. How I use Pacing When I go to work I make sure I have a short stop on my journey to stretch as I find sitting very painful and can only sit for a short time before I become very uncomfortable. I used to wait for the pain to kick in before I would ask to stop, now I find when I get to work I am in less pain because I have had a stretch on my journey. I work with computers so I make sure I set my alarm on my phone every 8 mins, as this is the time I can sit at my desk before my pain is triggered, to get up and have a walk or stretch. People at work wondered what I was doing at first and gave me strange looks, which made me feel a bit self conscious, now they are used to it and pay no attention. At home I try not to spend too long on any one activity in order to reduce my pain as much as possible, getting dressed I do in stages as this is an activity I find tiring! I do the top half first then the bottom so I can recover in between. I make sure I sit to clean my teeth, wash and dress as these take a lot of energy. In my physio sessions I am encouraged to use 'pacing' especially since my PT went on a course recently. I was continually suffering flare up's after my sessions and couldn't understand why, I expected to be a bit sore but not in pain for days, we realised that what I was doing was too much for my body to cope with, instead of cutting them out completely, I reduced my exercises and the time I was doing each one for and this has made a difference to the flare-up's. I was also advised to have between 2-3 supported rest breaks a day, where I just lie on my bed fully supported with cushions for 20-30 mins, to allow my whole body to recover from over working. Sounds boring I know! I was told how important this is in chronic pain for the mind and body. I find it difficult at times as I feel I am wasting the day and could be getting on with things but realise my body needs it. I can understand how having these rest breaks may not be realistic for you as family life gets in the way or work but it is so important to make some time in the day where you can allow your mind and body to recover. I am more aware of Pacing especially since going on the programme and it just takes practice, at times I think "I can't be bothered to get up" and continue what I am doing as I want to get it completed but then I suffer for it or I totally forget about 'pacing' as I am so engrossed in what I am doing. This probably sounds familiar! I found an interesting article from Moodjuice about pacing with chronic pain, which i have extracted some of the information below. I expect you will be able to recognise some of these patterns in yourself! I know I can. Living with chronic pain can affect people's lifestyles as they are limited to what activity they can do. This will vary from person to person but might include the following: Avoiding people or certain social situations Doing less activities you enjoy Giving up employment or working on restricted duties Doing less housework Taking painkillers and sleeping tablets Developing sleeping problems Having conflict with family or friends Become very dependent on family or friends Drinking or smoking more Everyone copes with pain in different ways, some will stay active until they can do no more, not wanting to let their pain 'win' and then rest to recover before returning to an activity for as long as they can again. This may result in their pain getting worse or flaring up as they carry out an activity for too long. The time taken to rest may steadily increase as they find their pain worsens and they end up getting into 'Boom and Bust' cycle. Others can only manage very little and stop an activity at the slightest hint of pain in order to avoid 'Over Activity' and making things worse, if they feel pain earlier and earlier into the activity this may stop them from participating at all. Once the pain has started to ease they try the activity again only to find the pain returns, after repeating this several times they start to get frustrated and the cycle keeps happening. These ways of coping with pain are not 'ideal' as it is better to do small amounts of regular activity guided by time rather than pain, this is why Pacing is so important. The diagram below shows this 'pain cycle' very clearly, starting with overactivity. I expect you may recognise this cycle? The problem is this pattern of overactivity/underactivity can occur on a daily or weekly cycle over a short or long time period. on 'GOOD DAYS' you tend to do more, increasing your pain and then having to rest for a few days due to over activity, then you start avoiding activities that cause you pain, overtime reduced activity can lead to your body losing condition this can result in stiffer joints and weaker muscles, making it less able to cope with higher levels of activity, you then need more rest and daily activity decreases. Some people due to their pain avoid any activity even on good days, for fear of causing a flare-up. It is very difficult to get the right balance. Pacing is a way of increasing your activity level without stirring up your pain too much. How can you avoid this 'Boom and Bust' cycle? Guidelines for pacing Take frequent short breaks, do something for a set time, have a break, then do a bit more. This stops the overactivity/underactivity cycle and helps even out the activity over the day. Work out your baseline first by seeing how long you can do an activity or exercise for on a GOOD or BAD day without aggravating your pain. This will probably vary depending on how you are feeling so reduce the time by 20% so it is a realistic amount Break tasks down into smaller parts, work out how much you can manage without triggering the pain rather than wait for the pain to force you to stop. Over time you should be able to increase the amount you can do. Decide on a realistic build-up rate, by increasing the task a little bit each day or few days Write your plan down and record your progress, because you are only increasing your activity baseline a few mins each day it can make it hard to see the progress you have made. Additional Tips for Pacing Start by pacing easier activities If you have an activity which you can't leave, try to pace as much as possible Change position regularly Asking for help with specific tasks is a great way of pacing Try to stick to your targets as much as possible If you can use pacing regularly in your day, over time you should have less flare-ups and be able to do more. Setbacks and Flare-ups There will still be times when you will have flare-ups even if you are an expert at 'pacing' this is to be expected with chronic pain but doesn't mean you are back to square one again and it happens to everyone. You need to pace down by reducing your baselines and breaking tasks into smaller parts and having more breaks, then when things have settled down you can return to your baseline again. Traffic Light System This was introduced to me while I was on the pain management programme by the OT. Each colour represents an activity, Red are the activities you find the most difficult, for me that would be Going to work or having a bath Amber are ones that are a bit easier such as cleaning my teeth or washing and Green are the easiest like having breakfast. The idea is to look at all your activities in the day and week and divide them into these colours, trying to make sure that you don't have too many red's together or Amber and that they are broken up with lots of Greens.

Tired of the shackles of self-slavery? Do you yearn for personal freedom and the ability to live life the way you want to? Here's an explanation for why you've gone dead in life and how to break free using meditation, understanding negative mental habits, and how to make new mental habits to recreate your life.

Here is how I explain Chiari Malformation (Chiari 1 Malformation and Arnold-Chiari Malformation), which I have lived with since age 14 and was diagnosed at 18

Dysphagia is a therapeutic term that implies that a patient experiences issues gulping. There are many reasons / conditions that can cause dysphagia. Furthermore, somebody who experiences dysphagia frequently finds that it makes life exceptionally troublesome. Contingent upon their condition, gulping can be extremely excruciating, which makes eating and getting enough sustenance a test. What’s […]

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“I hide the pain behind a forced smile."