Topic of the discussion
Posted on 02/05/2016 02:55
Just at the moment I'm having a tough time. Even the smallest of jobs takes it out of me. Managed just one thing today, despite the beautiful sunshine where I was. Half way through this little task my legs began to hurt and the pain became such a distraction that I had to ask for some help. Struggled to use the tool for lack of strength and became quickly disheartened. Hubby eventually had to take over.
I've been the glue for so long that's kept the family on task, but I'm coming unstuck myself now. Couldn't seem to lift my sons spirits today either, despite my efforts. He's fretting about college and fear of change. His distress was palpable despite me chore assigning to distract him. He has Aspergers also. He then developed a Migraine with the stress and had to give up.
My body is in some sort of meltdown. Severe rash all over, which itches like hell and is leaving me infected and sore all over. Got temporary relief for the first time in over a month today. Mixed some coconut oil (Solid) with 8 drops of lavender, heated it gently in the microwave and applied it all over. Heaven! Even needed help to do that however.
Couldn't even do any paperwork when I sat indoors to try. Fatigue was such that I took to my bed by 5pm, too wiped out to function. Now it's 2am and I'm wide awake acutely aware of how every little movement of the clothes over my skin feels like needles. I'm still dog tired, but just cannot sleep.
I find myself desperate for a small window of capability, if only to feel that I've accomplished something. Guess i'm just going to have to sit it out until this episode passes. Tired and low with all really.
Beginning of the discussion - 18/05/2016Total Wipe out https://www.carenity.co.uk/forum/fibromyalgia/living-with-fibromyalgia/total-wipe-out-980
Posted on 18/05/2016 17:39
I'm not sure what it is at the moment but I'm exactly the same , the lowest iv been for a long time with no ability to work much ! I'm a builder and have been for years , but now even the most simple of jobs is too hard for me to do because of the pain in my muscles , and the seizing up and cramps that come with it ! I can't even hit a chisel with a wooden mallet for more then a few minutes and I have to stop for cramping up ! Hopefully it's just another bad patch and I will be feeling a little more capable soon ! I'm not sure about others but theres not much help for us who are suffering and not much belief that's it's true !!!! I am just sick of feeling so tired from the whole thing ! Just one day without pain and a full nights sleep would be a relief !
Posted on 19/05/2016 05:20
I so hear you.
Posted on 24/05/2016 20:38
I am tired all the time but i dont really know my cause, yes i have depression but i dont know if its that or what anymore, so fasting blood test for me tomorrow see whats going on, or try too
Posted on 30/05/2016 16:32
I have pain in my feet today and cramp in my leg - awful! I didn't sleep well - waking at all hours! Tried to do a bit of the garden to take my mind off it but had to stop after a short while to rest - I used to love the garden but can't do a lot anymore - everyone looks at you and thinks it's idleness but try to live with it - dreadful!
Posted on 30/05/2016 18:03
I have both osteoarthritis and fibromyalgia. I`m also going through a bad phase at the moment, i am in constant pain mainly in my knee at present i can`t walk due to the severity of the pain. I have tried various medications and i am still on some which have not been of any benefit. Like all of you i would love to be able to sleep without all the pain that keeps you awake. I would love to know if any of you have found something that works for you.
Posted on 31/05/2016 06:12
I have RA/Fibro/CFS/Anaemia to conquer. I too am in quite a bit of pain and yesterday i was rubbish.M|y fingers hurt all day long.I got up feeling like i was 110yrs not the 60yr old lady that i am.I have slept last night very well at all and it is just gone 5am and i am down here. I wonder if it is the weather with me,well some of it as i have onlky been on the iron tablets a little over a week now.
Aspergers i had a friend whose son has it,so i have an idea how hard it is for your son,all i can offer is he will be alright once he gets to college and get his routine in place he will be fine. My friends son now holds down a full time job and has married and has two young children and a very good understanding wife who helps him manage his condition.xxxxxxxx
Posted on 31/05/2016 12:02
Ok , so the answer is quite simple!
There is no cure ,so pain relief seems to be the only answer to helping and getting sleep .
I have tried and have exhausted every possible pill my doc has given me in the last 10 years (all of which are just there to shut you up ,mask the pain and not cure anything)my doctors own words not mine !!!
Trying to work with this illness is bad enough without the added effects of mind bending drugs that have no effect ,except to space me out and alter my perception ! And then with long term use destroy my kidneys ect !
I was told that marihuana is a good drug to take for pain relief on a daily basses for this illness so I did some research on the internet I was suprised at what I have discovered about this drug .
When I approached him about this drug and using it for my illness ,even my Doc agrees ! So now I am waiting to see the pain clinic for a spray that I can use but only they can prescribe ! They don't openly tell you about this because it costs so much money to prescribe and your doc will be reluctant to prescribe it because of the legal implications so he will refer you to the pain clinic ,but only if you ask!
In the meantime I have purchased some marihuana and a vaporisor (as I don't smoke )and have tried it to see if it works as well as my research says .
Amazingly it does!
If I have a vape before bedtime my body feels much much better , I can move better ,I can do things I'm not normaly capable of !!! and the real bonus is ,I get a much better nights sleep without waking up every half hour or so ;-)
I have also discovered that I can turn it into butter and put it into my food for the same effect . I can make it with coconut milk and use it as a balm on my worst pains or put a little in some hot chocolate before bed to also aid a full nights sleep .
Alough the side effects of being stoned might put some people off ,I feel I can get on with my day much better then the side effects of some of my docs prescribed drugs ,such as Amatriptyline ,gabapentin and the worst of them all for me inipromene !
These are all filthy man made chemical drugs that are highly addictive and alter the chemical balance in you brain !!!! They have been handed out to me like sweets just to try to pasify me and shut me up not cure me ! Never forget ,whatever you are told ,there is no known cure as yet ,nobody seems to even understand this illness !!!
My opinion is
Now I have discovered this drug I will not be going back ! Although I know it will not cure me (just like the docs drugs) I do know that it will help ease my pain on a daily bassis ,it will help me get (is helping me get ) the sleep that I have been missing and if I wake up in pain ,a little in the morning helps to get me through my day !
It is a shame that if I get caught with this drug I can be prosecuted ! But I think that's about to change . My research also tells me that if you get caught and you are using on medical grounds and can prove that ,the police are reluctant to try to prosecute (But don't take my word for it )
It should be readily available to all suffering with this illness ,we should not have to get involved in purchasing from the black market something that is so benificial to those that suffer !
My recommendation is ,if you are suffering ,as I am ,from fybromyalgia ,you owe it to yourself to try it !
It is about to become legal here for medical use ,it has been made legal for medical use in many countries now and many sufferers agree with me with their own experience of how good it works for them !
my conclusion is ,although I still have bad days I have found a drug that can help me and is benificial to me ;-) it has no long term effects and contrary to beliefs is not even adictive ,indeed ,ask yourself this ,if we were not built to use this drug for the relief of pain then why do we have canaboid receptors in our body !
It is the oldest drug known to man and has been used for thousands of years to help with many illnesses !
So I made a choice and have tried it . After many years of suffering and experimenting ( because that's all each and everyone of us is doing) with various Doctor prescribed drugs ,I have discovered a drug that actualy brings me relief!
Im so suprised and relieved to discover the benefits of marihuana that I just wanted to share my positive experience with you all . This has all happened between my last post and today !
The choice is yours , don't just take my word for it ,do your research and you may find it's the way forward for you too.
Good luck ,and I wish you all well X
Posted on 31/05/2016 12:05
Hi sylvia, thanks for your comments. My son is in college now, it's the change for the future he's fretting about. He's been given options, but not one's that he can use.(Mainly Neurotypical options, with no regard for what he, as an Aspie individual, can cope with.) He's not able to cope with full time work, due to stress induced illness that has dogged him since childhood, so we are exploring alternative options, but the whole change issue is extremely anxiety provoking for him. Being his mentor of sorts can be extremely draining when he's in a highly anxious state and helping him to see clearly amid his racing mind becomes more challenging the older he gets, yet the reassurance he is able to offer others; he identifies of needing support, is boundless. It's a unique Aspergers situation presenting complex challenges, but equally draining for those supporting him and of course I have health issues myself now.
Re pain, I've been using Vit B complex, Vit D, Calcium and Magnesium as well as using Epsom salts baths, with variable results. I notice bad weather seems to make the fibro worse, yet good weather doesn't necessarily ensure the pain is relieved. Now every day is filled with pain, but it's whether it is manageable on a particular day, that dictates whether I can get anything done. My bad days are agony both mentally and physically. I'm currently looking at a complete life change in terms of how I approach each day. Mindfulness daily, a better diet (Courtesy of finance issues, the diet has been more limited of late and filled with more processed food, which i can't tolerate well long-term.) and trying to manage my stress levels a little better.
I wish all you fellow sufferers a peaceful and a pain-free day. Would love to hear your strategies you use for managing the pain.
Posted on 31/05/2016 14:45
I too suffer with fibro and sleeping is awful. Try to housework etc and its a effort to get anything done. I was on several meds but about 2 months ago i decided to stop most of them as i feel just a waste of money as i pay for prescriptions. Iam now on just two slow release tramadol tabs a day and is sleeping a bit better but not right though, I seem to be a bit better during the day now than before when on loads of pain meds. I drink a lot of cherry juice which is by don simon and its a pound a 1.5 litre bottle and i go through three a week but it seems to help no idea why. I would never ever resort to buying cannabis , or even marijuana as could land up with a criminal record if i got caught. They may help pain in the short term but are doing you no good in the long term.