Thursday, November 17, 2011
Severe Fibromyalgic Flare up with Hypermobility Syndrome
Although one of my rheumatologists alluded to me having Fibromyalgia (FM) I tried very hard not to take this as an emotional hit of another diagnosis, but tried, as K suggested to accept it as a description of symptoms going on. I am in one of the most severe flare ups I have possibly ever had in relation to pain and FM+HMS. I am so fatigued I had to sleep between the people I was working with today. I had to take a taxi home. I have had two long hot baths in less than four hours and taken Diazepam, Codeine, Oramorph and anti-sickness medication. I have tried stretches, doing my physio exercises, relaxation, watching TV, but the pain is searing, sharp, and in nodules in my neck, shoulders, hips, calves, hands, arms, feet, virtually everywhere. I feel so isolated. I just want someone to hold me. I have cried, I have held my cat. I have eaten chocolate. I feel under huge pressure to be at work tomorrow because I am the only person on duty in my department. I am being seen by my Rheumatologist because he is visiting my place of work tomorrow, so that is the best reason I have of going in. I have no brain. My concentration is terrible. I cannot follow instructions. I forget everything. I am useless. Maybe I am human, or just trying to cope with an exceedingly difficult situation. It has been my aim to try and help others. I need help from people, but it is pathetic asking for help with shopping. Last weekend it took me half an hour to change my duvet because my arms were too tired to manage the task very quickly. I feel too proud to ask for the help I need and don't want to bother my friends. Worst of all, I am sure that K is absolutely sick of me, but I need some help and a priority for now has to be getting back on top of my pain and severe and relentless muscle spasming. I am depressed because this is such a huge flare up. The Isobel I know wants to keep on beating this situation so she can continue helping others. I am sure I will be able to do so again in due course.
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Oh my dear I am so very sorry you feel so absolutely dreadful. I understand. I do. I am often as you describe and I do not work. My daughter is very ill at the moment with her EDS very ill.
I can't change it all for you I just wanted to send you a virtual hug? If thats ok not the same I know but as well intentioned as the real thing.
I wonder sometimes about your pain relief. Thinking that taking two relatively weak opiods for flare ups pain is the best way forward. A pain management nurse pointed out to me a while back that my dihyrdrocodeine plus top ups of oramorph was not proper pain management and that patients who came with that scenario were transferred either to patches or s/r morphine tablets. I am now on s/r morphine tablets with much less occassional use of oramorph for breakthrough pain than when I took dihydrocodeine. I also need to take much less diazepam for spasms. I can't use the patches unfortunately - allergic humph! Good advice from said nurse. Appropriate ongoing pain mangement including all the stuff you know about pacing, distraction all the multi disciplinary approache milarky to pain management! Waiting until pain is out of control then swallowing all availvable pain relief with not very much relief at all is not effective pain management to my mind. I wonder if its time to re-visit this aspect of managing your hypermobility and associated conditions. Oh yes and be kind to yourself - I wrote a garbled comment last time which I hope you 'got'.
Sometimes in order to help others you have to help yourself first ie: for starters by being kind to yourself. Don't be a martyr it will make you sicker in the end.
Really really hope you feel a little better very soon.
Take care and don't forget to waft around on a cloud of virtual warmth for a little bit whilst you just accept the virtual hug.
xoxoxoxox
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