Just thought I'd do a quick update about how I'm getting on..
Since my last post I've had a few more medical appointments.
I went back to see my GP about all my abdo problems, and in particular my nausea. He was very supportive and relaxed with me, and said that it is difficult to know what to do with my nausea because we don't know the mechanism behind it (and neither does anyone else) but he said that we can just keep trying. I was just pleased to hear I hadn't already exhausted all possible options- although he did say I've tried all the ones he normally uses. It was really important to find something to help because my nausea was severely hampering what I was able to eat.. He prescribed Betahistine (Serc), a medication normally used for inner ear problems/meniere's disease, it helped quite a bit, and has helped to get a bit more of an appetite back. Unfortunately I've messed up a bit with sorting enough of them for the holidays, but I'm doing ok-ish and do have a prescription for one more week's supply, so can get those, but if I need more I'll have to see a different doctor..
My GP was concerned about my calorie intake because I was really really struggling with eating at this point and only really managing half a nutritional supplement per day (150 calories) in addition to dinner which was the only meal I was really managing.. so we were both a bit worried and wanting to get my nausea down and my intake up as soon as possible!
The painkillers he prescribed me the time before are working really quite well, although they seem to run out between 5 and 5:30am, so I quite often wake up then in agony.. Needing painkillers certainly makes lie-ins less pleasurable!
I also had my regular check-up with my consultant. He was really pleased I had got my scooter and it was helping so much. He too was concerned about my nausea, and referred me back to the dietician. All the blood tests he had requested last time for specific conditions that cause muscle weakness had come back negative, so we discussed the fact that there's nothing currently identifiably treatable causing the weakness so other than doing what I can in terms of physio there's nothing else that can really be done. My consultant said I should discuss my mobility concerns with my physio, but we've already put together a physio plan, I was just hoping for an explanation or some hope that something could be done to make things better- but this is CFS we're talking about.. He did suggest I get a pedometer though, to better monitor how much I'm doing per day to try to keep it more stable. My legs are also covered in bruises at the moment, which apparently isn't uncommon in CFS sufferers, but I had blood taken to test all my clotting etc to make sure there isn't an underlying problem. He recommended I find a multivitamin with vitamin k in given my difficulties eating and to also help with clotting. I discussed the fact maxfax had mentioned considering changing my medications for my facial pain and said I wasn't keen and he said that he saw no reason for them to be changed if I was happy with things as they are and could tolerate the residual pain, so we agreed that unless the situation changes I would stay on gabapentin rather than changing to pregabalin and starting again with finding which dose I could tolerate and risking side effects and interactions etc.
I then went and spoke to the dietician and my weight had fallen below 45kg.. I'm nearly 5'8", so this is really really not good.. I explained the difficulties I was having with eating and drinking enough of the supplements so she has given me a large selection of different supplements to try in different flavours, by different makes, different number of calories per ml etc. I've got soups and milkshakes and juices and shots, so hopefully something will suit me.. She said she'd ring me after a week or so to see how I'm getting on with them..
Some of them are completely disgusting. I started off on Fortisips- I hated the banana, thought the strawberry was ok-ish and the peach-orange yoghurt-style suited me best, but I was only managing half a bottle per day. I then tried the raspberry yoghurt-style which was also quite nice. They did seem to be adding to my stomach pains though.
Since seeing the dietician I have tried:
• Pro-Cal Shots Strawberry: vile, but small, so can get them down..
• Fresubin Chocolate powder (mixed with milk): not bad
• Fresubin Strawberry powder (mixed with milk): unbearably yucky
• Vita Savoury Leek and Potato soup powder (mixed with water): edible
• Vita Savoury Golden Vegetable soup powder (mixed with water): YUCK
• Fortisip Compact Strawberry: alright
• Fresubin bottle Forest Fruits: a bit odd..
I found the hospital trip quite deflating. I couldn't see much reason for hope. A lot had gone downhill since my previous appointment but it felt like nothing could really be done. I felt very frustrated about the lack of answers about anything and was worried about my weight loss and felt overwhelmed by all the dietary supplements. I got home feeling exhausted, very nauseated from all the talk of supplements and felt quite down about the lack of optimism.
Thankfully I was soon feeling brighter. I'm now doing quite a bit better with eating although lunch is still sometimes a real struggle. My nausea is still a definite problem, but I'm coping ok, and at times am eating completely normally. Today my nausea has been really horrible again, but I've still eaten reasonably well- hopefully tomorrow will be better.
I've been away for a few days with friends and it was great- had a great time and managed really well. My CFS didn't cause too many problems and I was totally independent thanks to poppy :) I'm still incredibly pleased with poppy, I've really tested her over the last couple of weeks and she's performed amazingly- I'm so, so pleased, and she is still absolutely brightening up my life- things would be dreadful without her at the moment, but I'm having so much fun!