I dont know what to do any more

Gardener

New member
Joined
Jul 14, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
Hi David,
I have had fibromyalgia for decades. A new pain management md prescribed LDN and with one dosage adjustment I have no symptoms of fibromyalgia. I feel like I new person and feel very blessed. I try to tell as many people about LDN.
please look into it.
 

Gardener

New member
Joined
Jul 14, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
My life situation and my symptoms are making me suicidal No one's helping me and I can't care for myself. I live in the UK I've been diagnosed but I can't get any real help. I don't want to live like this any more
Hi,
Look into LDN -low dose naltrexone. I had fibromyalgia for decades and last yr a new md prescribed LDN 4.5 mg and it decreased my pain and fatigue significantly. Then month later I still had lingering symptoms and my dosage was doubled to 8mg. That did it! I no longer have any symptoms! I live a new life and can’t believe how terrible it was living with fibromyalgia. My 9yr old son thinks he has a new mom. It has hardly any side effects. I only had insomnia for a few days only. I take it at night and wake up feeling bright and energetic and freakin happy! Please just try it!
 

NY Farmwife

Member
Joined
Jul 26, 2021
Messages
10
David, living with fibromyalgia is a lot like living inside a detective story. Each new pain has to be investigated, isolated, addressed. Once some major medical problem has been ruled out, you have to figure out how to undo whatever trigger point you've activated. Try tennis ball pressure, and see if that works. Warm tub baths are good for easing any low back pain--including a temporary help for any urinary problems your doctor may have missed. You have a chronic condition. It does not go away. But you can find ways to make your life more livable.

Please be kind to yourself as you readjust to the fact that your body needs more rest, more recovery time from any exertion, and a LOT slower addition to any physical activity. If you can get warm water therapy or a warm pool based water aerobics class, check it out. You may have to be happy with a slow walk around the block--or on a bad day halfway down the block and back--and give up on running marathons!:giggle::giggle:

And, no, your life is not over. My fibro started at the end of my second pregnancy--49 years ago. I raised my boys. I've managed our farm's finances, I started my college career at 37, earned 3 degrees, taught handicapped adults, and have lived a productive, happy life. I did it by finding each problem, isolating it, treating it, and going on to the next problem. With fibromyalgia, there will always be a next problem, but THERE WILL ALWAYS BE AN ANSWER, if you look for it.

There are many ways your life has changed. But fibromyalgia will make you a stronger person--maybe not physically, but certainly emotionally.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Davidh31, what type of help is it you need, if it’s fibro pain and fatigue certain diet, lifestyle changes stress elimination and medications can help( your medical practitioner has a care of duty as their job to do what they can for you) if it housework(which I struggle with) maybe get someone in through a trusted agency, some daily tasks can be improved with maybe alterations/adaptions to things within the home ( I’ve had my taps changed to lever ones) bar grips on my bath wall, ( my occupational therapist got people in to do them, Lego type steps to get into the bath and plastic wrap around plug attachements from a local disability shop, I’ve always found citizens advice to be really helpful with a lot of things, the council and social services might be good to get in touch with too, it might seem like admitting defeat asking for help and having things changed but it’s just a new way of survival, also if your struggling with depression and anxiety your dr might be able to help too ( I’ve had those problems all my life caused by my upbringing, relationship d.v situations and the fibro, lets not forget while we’re here🤪) I think I’ve covered everything, I think this is my longest post EVER! , my 1st forum my1st love , hope some of it helps somehow💫🌟⭐️
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I still have the back and bladder pain but I'm not having to use the bathroom anywhere near as much and I just sort of generally feel better. I'm left wondering did I have an infection or was it the attention from the doctor or was it sort of a placebo effect.
Hey David, praps you'll be back again...:
I've had pain before peeing since the begin of fibro whilst my pee frequency (& pressure) has been high for quite some years, making me not drink that much (however I eat a lot of raw veggies & yoghurts). Neither urologist nor nephrologist or any other doc found anything to explain either.
The frequency greatly improved since only drinking soy milk and hardly any water, tea etc. After a year of that I am now able to drink more water again, with only a normal urge. An alternative health practitioner had the idea to try this after realizing that I don't tolerate much water on my skin, sort of 'allergic to water', inside and out. Why soy milk (7,5% soy) should make a difference I've absolutely no idea.
The pain has greatly improved from 2-5 "of 7" down to 0-2 since using the supp GABA, which relaxes muscles, apparently even these involuntary ones, which no other supp till then managed, magnesium, B-vitamins etc.... Adjusting/increasing and balancing GABA with glutamine is getting it down even further at the mo. As well as improving 9 other symptoms, like stiffness.
 

Davidh31

New member
Joined
Aug 30, 2021
Messages
3
im in a really bad place and i just go no clue whats going on any more. not rally interested in talking to anyone im just extremely volatile. council nhs mental health services job centre all useless. i cant cope any more and im sick of hearing about all the things i need to do

go ahead and close the thread or whatever because i just cant deal with anything
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
im in a really bad place and i just go no clue whats going on any more. not rally interested in talking to anyone im just extremely volatile. council nhs mental health services job centre all useless. i cant cope any more and im sick of hearing about all the things i need to do

go ahead and close the thread or whatever because i just cant deal with anything
David, I know this feeling, as I have had it myself. I am sorry you are going through this.

I am going to leave the thread open, in case you ever want to come back. Know that we're here for you if we can help.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Davidh31, I do hope you won’t leave the forum, I can’t speak for everyone on it but I had to fight tooth and nail to get support, payments, decent mental health help + just about everything through what fibro had taken away from me there was a lot of chopping and changing with different people and like you’ve said some of those people/organisations are useless 100% I went right under through sheer frustration ( ending up having my stomach pumped + on a drip for 2 weeks in hospital) I hope you don’t get to that stage, please take care we know how hard it can get and the repercussions it can bring, but we’re all here if/when you want to come back 🖤
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
im in a really bad place and i just go no clue whats going on any more. not rally interested in talking to anyone im just extremely volatile. council nhs mental health services job centre all useless. i cant cope any more and im sick of hearing about all the things i need to do

go ahead and close the thread or whatever because i just cant deal with anything

Hi David,

I'm so sorry to hear about everything you're experiencing. It sounds like you're in a really deep depression, compounded by all that struggle you're trying to get out from under. It's an awful place to be, and I wish I could reach through my screen and help you in some powerful way. That place is really familiar to me too. Please don't give up - even if you need to just shut down for a while, the other side of this is on the horizon, even if you can't see it at all right now.

You said you're feeling very volatile - are your moods and thinking swinging very rapidly? This came with my fibro, very acutely when I was in the worst shape, which lasted a long time. I felt like I was losing my mind, swinging all over between really deep lows, volatile moods, and suicidal ideation - it was the pits! It's just a random suggestion of something to look into - a bit controversial and not something for everyone - but my turning point on getting those awful swings to stop was starting taking low dose lithium orotate. It's a much, much weaker version of what they give for bipolar, and some also use it to treat depression and fibro. I take 5mg a day and won't be stopping in case those feelings come back.

Otherwise, as the ladies said above, you know where to find us, and we'll always be here for you if you need or want to reach out - no judgement or pressure. I'll be thinking of you, and hoping that the support you need is on its way. Sending strength, too.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
That was scary, I hope he wont do anything dangerous to himself jem’s, I was gonna advise him to see his dr but he said he didn’t want to listen to anything, what can you do in init? I feel all funny now ( funnier than usual 😜) we’ll just wait see if he comes back, ??? Speak soon hope you ok ❤️🖤❤️
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
That was scary, I hope he wont do anything dangerous to himself jem’s, I was gonna advise him to see his dr but he said he didn’t want to listen to anything, what can you do in init? I feel all funny now ( funnier than usual 😜) we’ll just wait see if he comes back, ??? Speak soon hope you ok ❤️🖤❤️
I'm ok, love - hope you are too. Always tough to know someone's suffering so - we all just have to try to do our best, whether we're in it or on the outside 🦋 x
 
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