Are doctors letting down parents with chronic pain?

Last week I was in hospital for a new drug trial to see if it will help me manage my pain better on an ongoing basis. This is really my very last untried treatment, which only has a 30-40% success rate in the general pain population, so I'm feeling both optimistic and pessimistic at the same time. The doctors explained that it might not work. They told me not to get my hopes up too high. They told me that it would at least be worth a try. 

As usual though, I feel somewhat let down by my medical team, and as always, it revolves around me being a parent with chronic pain. It's something that happens to me so often I really wonder if it is something that is happening a lot more in the medical community than we realise, if other parents with pain get treated the same way?

When discussing this treatment with my doctor, she informed me that it would be a one week admission in hospital, and that I would need to arrange child care for my children for that week. That was the extent of her consideration for the fact that I am the primary carer of two small children. I pressed her for some more detail, how many days and nights specifically, one business week or a full week, and could I breastfeed while taking the drug? My questions were answered (5 nights, 6 days, and no I couldn't breastfeed or use the expressed breast milk) but she didn't offer up anymore information about the experience.  

Based on the info I was given, I chose a set of dates to book in, and arranged my mum to come and look after the girls. I took a supply of stuff to the hospital to keep me entertained, made arrangements with mum to bring the girls in to see me daily, and was cautiously optimistic about the treatment and potential benefits for me. 

Of course, after admission the drs start talking about possible side effects. Constant monitoring of liver for toxic stress, potential for hallucinations, headaches, nausea, lightheadedness and feeling a bit ‘out of it’. No mention of all this before admission, so I wasn't too concerned because I was thinking this is probably the extreme side effects that don't happen to most, but that they have to mention. Except that as they slowly increase the dose they start happening. Except for the liver stress and hallucinations (thankfully) I encounter all the other side effects. I feel terrible. And I tell them so. They drop the dose down and it eases a little, but they tell me it's quite common to feel so awful. I start wondering why I even bothered trying this treatment, when the treatment makes me feel so awful.

Of course its frustrating to anyone not to be told what treatment will really be like before you undergo it, not being given realistic information about side effects, but it is even more so when you are responsible for the care of young children. I'm lucky that I had my mum looking after my girls during the week, but I wasn't aware that I would hardly be able to function during their visits, to hardly be able to cuddle and hold them, or feel unsafe carrying my baby because I was so lightheaded. Even more so, no one bothered to tell me how long after treatment stopped before I would feel normal again. And that scared me because I only made care arrangements until I got home from hospital. No one mentioned prior to treatment that I might not bounce back to my normal self once the drug infusion stopped. When I asked that question two days before I went home I was told, ever so casually ‘oh yes, you'll need help at home until at least the middle of next week’. Thanks for telling me in advance so I could plan for that.

This is not the first time I have encountered this type of negligence through lack of information. Around 2 years ago now I tried a treatment which involved burning some nerve endings. It was a two step process where one session they did a local injection on the site to make sure it was the right spot, and then another session where they used a radio frequency to burn the nerve endings. Because I underwent a general anesthetic for both sessions I was given the usual instructions about not driving for 24 hours, a responsible adult should be with me for at least 24 hours incase of an adverse reaction, but that was the extent of the warnings. It all seemed pretty straight forward except after the second session, where they actually burnt the nerve endings, I was in incredible pain. Acute intense pain on top of my normal pain. I couldn't bend at all, even slightly. I was in agony. And it was very bad for a week, and started to improve slowly over the second week. I had arranged for my mum to look after Charlotte during the procedure and stay with me for the standard 24 hours, but I fully expected to be back to normal after that because no one had told me that it was highly likely I would be in a lot of pain. Luckily mum saw how bad I was and changed all her plans to stay with me. Two weeks later I went back to see my doctor for a review and I mentioned how much pain I had been in, and again, ever so casually, she informs me that that was normal and I probably had recovered quite quickly compared to others. 

The problem is when you are a primary carer for young children this negligence of providing full information regarding realistic recovery times can have severe consequences. So far I have been lucky to have my mum available to help me out, but it has often meant she has had to drop her plans to help me out. If I was given more information up front I would at least be able to give her some notice and plan in advance. I don't know what questions to ask if I am only given a small snippet of information to work off.

To me, it just highlights how inexperienced the medical teams dealing with chronic pain are when it comes to pain patients who are parents to young children. Time and time again I get given advice that is unrealistic in the context of my life with little ones, and not being provided with realistic information about the effects of treatments and recovery times means I am often left feeling uncertain and stressed about if I will be able to safely care for my children, or if I can make last minute arrangements to get some help. I know that doctors are legally required to go through all this information when you have surgery; asking if you are the primary carer for anyone and advising you of any physical restrictions you may have and that you will most likely need help with the children. I wonder why the same care is not taken for some of these minor procedures and treatments, when the effects can be just as bad. Now that I have been through this a few times I should have sufficiently learnt my lesson and be able to ask more questions about the realistic side effects and recovery times, but the fact is that I shouldn't have to – the doctors should be upfront about all of this to start with. 

Have you encountered anything similar? Or have I just been unlucky in my experiences?I’d love to hear your thoughts!