Pain Management consultation
I had my very long awaited (referred April 2019) appointment with the pain management doctor today. Whilst I agree with her general holistic approach- 'medicate less to live more' to summarise.. I just don't see how I can live with the changes she has suggested; cut out carbs being the 1st thing she's suggested. I mainly live on baked potatoes and salads and can't imagine living with no bread, pasta, rice or potatoes. I feel like I do eat healthily asides probably eating too much chocolate and drinking too much wine (i.e. Any!) and avoiding anything processed seems unrealistic to a working mother of 2 fussy eaters and a husband who doesn't work and can't cook who would happily have pizza or a fry up every day. As much as I appreciate her input I am desperate for someone on her to tell me that cutting out carbs made no discernable difference to their pain or their sleep?!
Hi Sarah. Welcome to our world! I have found that even among our PSA veterans, we are very reluctant to talk about pain management. It makes us seem like wimps when we can't cope. For me, however, I admit that I count on 100mg of Tramadol most days in order to be able to get some sleep. It has been a huge blessing to me. I used to have the prescription through a pain management Doc but now my Rheumy prescribes it. For those who manage better with a pizza and pasta free life, good for them! For my part, I am grateful to have found this avenue and I am managing much better because of it.
Whatever helps is a blessing certainly and everyone is different. I know what you mean, I think of my daily pain as a background noise as much as I can, it's nightly when I can't distract myself that is the worst. I've had a couple of trials of amitriptyline over the years, most recently before this was 6 years ago so just cos it doesnt suit you now doesn't mean it might not help you on the future I guess! Previously I did have the side effects as you described, plus some quite worrying heart palpitations so I was understandably very reluctant to give it another try but I am glad I did. It hasn't taken away all my sleep disturbances but has reduced my night spasm and cramp pain by about 70%
You make a very good point. We change over time and what didn't work once may be a viable option at another time. I will certainly keep this in mind as I, like all of us here, feel my way forward on this journey.
Hello
I can certainly relate to the situation that you find yourself in. Finding pain management, managing a lifestyle that makes it 10X more difficult to maintain a “diet,” and figuring out how to actually get to sleep in a world that makes everything a giant hurdle is no easy task.
I’ve made some significant “lifestyle” changes over the years that have made a difference in my ability to manage my pain and life with PsA. I can certainly understand your feeling of frustration after your long-awaited appointment with your pain management doctor. No one wants to go to a doctor, expecting answers, pain relief, and understanding only to be told to change your diet. Ugh! That being said, in my experience, changes to my diet have made an impact, but those changes don’t happen overnight, and they certainly don’t happen in a sweeping notion like “stop eating carbs.” And thinking that a statement like that can help someone in our situation is absurd.
There are certain foods that are scientifically proven to cause inflammation, thus fueling our PsA fires, but it isn’t all carbs. Rather, things like gluten, nightshade vegetables, and some types of dairy. (Potatoes are gluten free 😀 )And those changes can’t be made overnight. I have spent years (yes, years!) figuring out what contributes to my pain and my inflammation. I’ve slowly made changes to my diet (and yes, my family’s diet too) that make living with PsA a little easier and helps me feel better. My daughter (7) has PsA too and even she is learning the relationship between what she eats and how she feels. Think of it like a puzzle and there are many parts that all work together to create a larger picture, and what we eat is just one piece of the puzzle. What we eat, how we move our body, the quality of rest we get, the medications we take, they all work together to form the bigger picture. Without each piece, the puzzle would be incomplete.
I know it isn’t for everyone, and that’s okay. I also have 3 kids, and my husband would be totally content to have pizza and Chinese Buffett for every meal as well. It isn’t easy that’s for sure. We all need a little help to get going and figuring out how to manage our pain and our sleep is the first step. Do you plan to go back to the pain management doctor? Are you also seeing a rheumy? HOw are you doing? -Leanne, Community ModeratorI started my pain management programme (run by the nhs which the pain management doctor referred me to) and so far so good. Its the 4th session tomorrow and despite a slightly cringe worthy introductory session, I've found it very interesting and informative. I'm also finding the group setting really helpful, in that we are all chronic pain sufferers - in total we have had pain for approximately 380 years! We are sharing our experiences and that alone is invaluable. Knowing how I often feel towards my pain isn't unusual and that others feel the same is oddly comforting. I've even made a friend in someone I probably never would have met otherwise. We are following the Pain Toolkit which is worth a read through online if anyone is interested. It is gradually changing my mindset towards living with long term pain, acknowledging frustration and set backs are a normal part of it at times. Above all I need to learn to identify and relax self criticism!
