Personally I don't think there is any other pain worse than fibromyalgia & it's related medical issues etc.From a biblical point of view it's like burning in hell for eternity.
It angers me so much when other people think you have a mental health issue because your given mental health drugs to suppress the pain.
I've trialled all of them via the NHS & the private sector & none have worked at all π.
Having fibromyalgia definitely means you're in it for the long run,so if you're expecting to see the light at the end of the tunnel,then it will be along time coming im afraid.
It is literally a crying π shame that not enough research is being done about this illness etc.
I wouldn't want to wish fibromyalgia pain on anyone.
To say the least, fibromyalgia is like being stuck in the twilight zone or in a daily limbo of neverending suffering.
After awhile people around you see you as a burden or a person of a moaning nature.
Being told you're be ok is pure hog wash.
What are your sensible views on this ?
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Fibroguy66
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I totally agree with you. I have tried everything NHS and private. Nothing has worked. Fibromyalgia is total agony. Support out there is nil.its been years of pure hell. Had enough! I am now housebound and living alone with my cats. Without them I don't think I would be here.
I am sorry that you are in such horrendous pain. I also didn't get any benefit from pain clinic. As well as the severe nerve damage that would have been caused by your awful accident, you mention a number of symptoms which could be related to low vitamin B12 - air hunger, extreme fatigue, itching and face pain. The stress to your body of the accident alone would have depleted several nutrients, magnesium and B12 included. Have you ever been given B12 injections to help heal the nerve damage? If you don't take B12 then it would be worth asking for it to be tested along with serum folate. B12 metabolism is complex and there are a number of tests which can help to rule in a deficiency or failure to metabolise, but none which can definitely rule it out. Nerve damage can start at a much higher serum level than the 'normal' reference range indicates as deficiency - this really reflects changes in the blood (which generally happen later), but this is poorly understood. You do not need to be anaemic or have enlarged red cells to be cellularly deficient in B12 or to have nerve damage which can respond to injections.
I am so sorry that you continue to find little relief from the pain. Have you healed from the spinal trauma? The nerve damage often associated with spine injury can lead to lasting pain as well. Sadly the pain medications are not always effective
Have have you found to be helpful to you other than medication?
I still think I would, If Hubby goes first ( He's older) I wont be far behind,
My Hubby knew a friend of a friends friend can sell him cannabis, Shock gasp and the horror,
I smoked that bad boy on the sofa I had in the shed and I can tell you that was the last time I had over 8 hrs kip and felt relaxed enough that I slept all night in the shed and woke up with a blanket on me (lucky it was in the summer)
I'm a couple of decades older now, If someone offered me the same deal now ???
I couldn't give a straight answer at this time,, I take a lot of drugs (prescribed) that take off a edge if I'm honest I'm going to have to ask for a higher dose soon because I cant get the sleep I need to give me the strength to keep back as much of these horrendous symptoms at bay for as long as it takes,
I am sorry for all you are going through, it is not easy at all. This is definitely not a competition and my intension is to make you smile even if for a second. Regards the worst pain: in the pot u hv sickle cell pain (research has it as the worst pain and equally misunderstood and fatal) add fibro, add low spinal injury sustained at work(canβt operate) add severe chronic pain syndrome, mix in nerve pain, a pinch of ovarian cyst pain, boiling nicelyβ¦β¦β¦..oh dear need a bigger pot. Hmmmm then my colleagues turn around and ask which pain is it? Soo many referrals to pain clinic - not helpful!!! Even the pain killers donβt help and some people think you just want drugsπππ
Hi sweetie I hear your suffering I'm a fibro babe too and still looking for something that can at least take the edge of this vicious painful condition found nothing on meds have helped but I did buy a electric heatpad which really comforted me also a real jacuzzi not bubble bath the jets move all the stagnant energies and soothe the pain...many years ago I was in an extremely dark place and just like you I thought it would be better for everyone if I wasn't here. I was sent to see a pain consultant who gave me a graph of the whole body and asked me to draw where the pain was omg my whole body was in pain from head to toes. He sent me to pain management I attended there for months which taught me not a lot I wasn't doing naturally ,from there I was sent to psychologist who took one look at me and said theirs absolutely nothing I can do for you,you've been there done everything which was true I was fast running out of options when in came a appointment for pain consultant and his pain nurse after months of trying various meds which actually interfered with my mental heal. At my last appointment with her,I was crying and she went outside spoke to her colleague and said oh now she's crying!!π± she came back into the room and started telling me this was me for the rest of my lifeπ± I can remember exactly what she said .I'm sorry there's nothing else we can do if you had cancer we could throw everything at you to control your pain but you've not,I said oh I'm so sorry I've not got cancer talk about nurse ratchet.. anyway from there I recieved an appointment to go for pain injections which the gave me in to my spine oh boy after a few days I felt like I could walk and do stuff I couldn't before so this is the best pain relief I've ever had...I wonder if anyone else has this experience? I truly hope you find some way of coping with your pain I've also had reiki which helped too.
Ibuprofen really gives me bad dreams for some reason or another & causes me alot of worrying thoughts etc.I spoke to my private professor of pain & he told me that I've now trialled all known SSRIs & painkillers & nothing is working & so fourth there is nothing more they can offer etc.
Oh dear .You get One chance In life ,it isn't life threatening but I know the pain. Work with it start with positive affirmations throw thr negative out in a box .You have got this ! Small steps and goals each day not beating yourself up about it .I have fibromyalgia and got whete I am today, small steps. So far it's taken 3 years .
I hope this helps π
mandieevans@outlook.com- life coaching, Fibromyalgia weight loss
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