I don't think I've posted here before but have been reading others for quite a while now.
It's 12.30am Monday morning. I've managed an hour 1/2 sleep until I woke up with a sensation of my entire spine burning from inside out. My hips /pelvis burn, my shoulders burn. I finally caved and had an oxycodone which I hate taking. I have to get up to my little one and get ready for work at 6am. I try so hard not to let it get me down but sometimes you know.... I live in a small rural town and don't know anybody else with fm. I have an I EPA k at the base of my spine but I know from experience this will last a few days and drive me to despair- there's just no let up. Does anybody experience this also and please, how do you make it bearable? 😢
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Leemaree44
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Has your doctor given you Pregabelin, (Lyrica) or Gabapentin? This medication helps your pain particularly at night but has to be taken for several weeks to have an effect.
Something that can help by taking when needed is amitriptyline which seems to aid sleep and get you through the day with less pain. You do need to take it earlier in the evening though as it can make you a little drowsy first thing.
We have had several young mums joining us this week and I think you all deserve a medal for coping with a child or two, working and keeping house too.
I see you are in New Zealand, hopefully the upcoming warmer weather will suit you better.
Unfortunately because of my underlying autoimmune condition i have an allergy to the sun so it's depressing cos I can't go out for long to play with my girl. Buy she's learnt early morning and evening when the sun has dropped are fun 😁 And that's when i garden too , which helps my mind but my body retaliates at night. Can't win lol
I was taking amitryptilene (sp?) for six months which my dr put me on following severe pain which started after major surgery last December. Looking back and knowing what I know now, i think the surgery triggered this flare. For weeks the only way I could get sleep ( because of the severe burning pain in my spine and lower back and hip joints etc, pretty much every joint and muscle in my body screamed) was to take sevredol (morphine) Even after 3 Months on amitrip I couldn't sleep through the night. Sevradol (morphine) was the only thing that let me get sleep for a few hrs at a time. I get so depressed sometimes having to take all these meds just to try and function in a relatively normal way. It's sad that all this is my 'normal' 😔
Hiya so sorry your going through so much pain. I understand your agony but I have to say I really don't know how you suffer this with a child and a job. It must be hell. I have the same pain. I take pregablin and co drydamol. Also morphine when bad. I use a lot of heat too. We're here to support you angel. Take care xx
Glory be....how do you cope? I do find heat helps....but I don't have to go to work!
I wish I could give you an answer but I cannot, but it doesn't stop me from wishing you well in the future and hope you find relief for your pain....Do keep in touch I would like to know how you get on.....Gentle Hug xx
Thanks for taking the time to reply. I take plaquenil which has been great - I've now got baby hairs growing back through! Exciting. I don't know how i cope - I don't know how not to cope because there is no other option for me.
Hi Angie, thx for sharing. Living in this small town and not knowing anybody with the same autoimmune problem as me plus fm, I really have no outlet, or anybody to ask 'is this usual or normal '. Or am I just being a sook and need to harden up. Which is usually what i tell myself. Heat usually works good but not last night. The oxy and the ice finally helped enough. I just don't understand where all the pain comes from and feel helpless that there seems to be nothing i can do to fix it. As well as being a single mum - my youngest is 6, I work fulltime and ive started studying law papers to progress my career. Im 43. I can't give in like my body wants to 😔
I can totally empathise with the lack of sleep and the burning pain. I totally admire your courage in coping with a job and a little nervous. I do hope the elusive sleep visits you tonight and the pain eases.x
Thankyou for your replies they're much appreciated. The oxy finally kicked in enough to take the edge off and I managed to get another few hrs sleep till dragging myself out of bed. One of those mornings my body just didn't want to move. My arms got fatigued just brushing my hair! Like id lifted heavy weights non stop for an hour. I've always thought i was just lazy and weak, but I'm beginning to accept it's the fm. Are these common experiences for others?
I am so genuinely sorry to read this my friend and I sincerely hope that you can find the answers that you so desperately desire and deserve. I want to sincerely wish you all the best of luck, and please take care of yourself.
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