Hi. I am new to this group so wanted to introduce myself and see if anyone out there has some helpful suggestions that I haven't tried yet. I am 43 and a mum of 2 young children. I have crohns disease, addisons disease, ME and fibro. I have been in a fibro and ME flare up for over a year now. It is the worst flare I've had since I was diagnosed in 2010. I haven't slept for a full night in over 20 years but at the moment my sleep is even worse than normal. My pain is very intense and keeps me awake because I am so uncomfortable. I take mountains of meds but I don't think any of them really make a difference. Sleeping tablets get me to sleep but don't keep me asleep. Pregabalin helps but I gain weight by the tonne as soon as I even look at the packet!
I have tried various alternative therapies but nothing seems to help. Does anyone else experience this or do you have any ideas that could maybe get me more than 2 hours at a time? Thanks for reading and I hope I hear from some of you. xx
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Chocolatespice
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I sorry to about your situation and health ,I have no solution to your sleep ,I have similar problems with sleep ,I just wish for a good night sleep .but as for pregablin I suffered more pain and weight gain I had to come ff it all together ,I feel nobody knows what they are doing ,we are just a Guinea pig for drugs ,they give us the meds and hope we go away .But maybe speak to a doctor you trust and tell them about the problems with pregablin maybe there a alternative .I know the things I put in this reply may not help ,but I just hope you get a solution and your flare up ease ,it a awful situation you are in ,god bless ,and hope your pain eases .
Thank you so much for your reply. You are right... I often times felt like a guinea pig! Especially with my crohns disease. I have an excellent doctor fortunately but having gone through this for so many years she is also at a bit of a loss as to how to help. I am currently seeing a clinical psychologist who is brilliant so I'm hoping the work I do with her will help with the stress that causes so much of my flare ups. How are you at the moment? Are you well? It is so reassuring knowing there are more of us out there, but it is also soul destroying knowing so many of us are suffering. I pray for a good night's sleep for you as well. Take care xx
I glad you have a good doctor ,and sorry to say struggling to sleep and in a lot of pain ,there’s seems nobody knows how help us with this awful illness ,all I can do take each day as it comes and muddle through ,I just hope yours aches and pain settle soon ,to a point where it is manageable and get the rest and sleep you deserve ..
How long have you had fibro for? Are you jn a flare up at the moment? And how long do your flares usually last? I am in full ME and fibro flare and have been for nearly 18 months now. This is the longest full flare I've had since being diagnosed 13 years ago. I always struggle with my fibro even when I'm not jn a full flar up but this time I just can't seem to get out of it. Have you had any success with anything that I may not have tried? Also, is there anything I can try and help you with? I feel so much for you xx
Hi chocolatespice ,I have have had my fibro since about 2010.but officially diagnosed 2019 ,,tried most things from physiotherapist to acupuncture ,tablets don’t work at the monument hardly any sleep and a lot of pain ,but I just plod on and do my best , hope everything settles down soon for you and the pain you find yourself in eases considerably ,just fed up at getting really no answers ,
Hello, I’m sorry you are going through so much! I’m the same it’s literally hellish, I get given different meds and the docs just stare at me when I’m talking to them as if to say there’s nothing I can do but carry on talking and I’ll give you something else to try, I’ve given up with them, I think the best thing to do is really be kind to yourself and do the best you can to ensure you are eating good and don’t abuse alcohol or smoke etc just be as healthy as you can and have a good routine! Xx
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