Sick and tired: Must admit over the... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Sick and tired

Mygeordiebud profile image
7 Replies

Must admit over the last few weeks I’ve been feeling more and more fatigued wanting to sleep all the time and in constant pain 24/7.

This disorder is just dragging me down more and more totally sick of it.

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Mygeordiebud profile image
Mygeordiebud
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7 Replies
thinkin profile image
thinkin

Hi,

Sorry to hear you are having a bad time of it. It's not a good place to be in. I think that for now just make sure you rest. If your pain feels muscular try magnesium oil. It's not really an oil but a strong solution of magnesium chloride. If you have someone to massage you with it all the better. It's great for cramp pains too. It can sting some people so do a patch test first. It may sting a little if you put it on a very hairy area, but it soon wears off and the effects it has on pain make it worth baring with. It's readily available on line. It is supposed to help increase magnesium levels in your blood too - one of the recommended supplements for FND is magnesium. You can also buy the salts to put in a bath. Frankly I feel like marrying my bottle of magnesium oil.

TENS machines help too, but don't use them constantly (ie. 24/7) as the effects can reduce over time. It's not recommended that you try opiates. Non-steroidal anti-inflammatory drugs are helpful. You may need stronger ones from the doctor rather than over the counter ibuprofen. All these methods can be used together safely.

Maybe when you are feeling up to it look at the FND Healthy Living section on the website. It took me too long to realise that I wasn't going to just get better, but I'd have to go at it from all angles. It is possible to improve your quality of life, but for now work on the pain and rest. You are not alone. xx

Mygeordiebud profile image
Mygeordiebud in reply to thinkin

Hi

Thanks for your reply my back pain and leg pain come from spinal disc problems I had L4 disc spinal fusion in 2009 which helped a little but didn’t cure my pain then last year I had to have a L5 disc decomposition where he had to burn off some of the disc as it was perturbing in the spinal column.

Felt a lot better for about two weeks since then the pain is getting worse day by day. At it’s worse before decomposition operation it was over 10 pain score which radiated from my spine down my left leg and at one stage couldn’t even move my leg due to the pain.

I am on 100mg amitriptyline at night 900mg garbapentin 3 times a day 70mg Zomorph twice a day 2 paracetamol 4 times a day plus other meds for heart and bladder problems.

Also have oramorph which I can take when required. Eventually got spinal surgeon to do another MRI of my lumber spine as it not right and got appointment on the 13 sept.

After the disc decomposition operation last August that’s when the FND started first with just my left leg then left arm then developed vertigo then a tremor then started affecting my right side to a degree where I can wake up paralysed cannot move arms or legs and can take anywhere from 20 minutes to a couple of hours before movement comes back and by that time happens I’m totally knackered. My neurologist said when I first saw him it should get better with time now 1 year after operation it ain’t getting better it’s getting worse.

Then copping with my wife bless her who has a Progressive MS and no treatment for that stage of the the disease. She also has spina bifida on top of that so between us we are medical nightmare and dealing with it every day just grinds you down makes you feel like your a strain on society and perhaps better of going to the other side at least it would be pain free.

thinkin profile image
thinkin in reply to Mygeordiebud

Hi,

Sorry didn't realise you had spinal problems on top of it all. Some people have good results from the CBD oil. A high dose of B6 helped with my mood and my movement. My FND means that if I walk or get tired or sick my mood drops. Since taking B6 I've managed to be ill without feeling suicidal for the first time in years - I'm far from cured, but at least my quality of life is better. Who would have thought a vitamin could make such a difference. B6 helps make serotonin, which as you probably know from your spinal troubles is found in the body as well as the brain. Something I didn't know until researching.

I hope the vitamins help. They don't work overnight. Remember therapeutic doses of vitamins are always higher than preventative doses (RDA's). If you have been left with a bad stomach from all the NSAID's over the years maybe use the sublingual sprays for vitamins where they are available.

On reading more about the magnesium oil I did a bit of googling on your behalf and there are osteoarthritis sufferers do find it helpful, though researchers are confused as to why it does help. It does look like it can work on people with bone pain by mimicking calcium in the bones and can help calm the nerves and inflammation.

There are arguments out there for magnesium not absorbing, but it does depend on the form. The trouble is they tend to experiment on healthy individuals which can sway results. The "Better You" magnesium oil was tested at Cardiff University independently and showed that it does increase serum magnesium. You can buy other brands that work just as fine.

I must say I bought it out of desperation and didn't expect it to work. In fact I tried it so I could put it down as tested and doesn't work and tell people so they could save their pennies (pain making me cranky).

Trouble is we are in it at the beginning and there's so much more research to be done. We can experiment on ourselves without the ethical problems doctors face. The trouble is that even experiments involving over a thousand people have been called too small a sample. Frustrating.

I was watching a documentary on quantum biology (BBC iPlayer - The Secrets of Quantum Physics - episode 2 'Let there be Life') and it turns out the model we are using, where receptors are triggered in a lock and key system, is wrong . They are actually sensing the vibration of the quantum particles. It's why two things such as almonds and cyanide though chemically different smell the same. Your nose, it turns out is listening to the vibrations.

Sorry for prattling on. I was just thinking that the way we see the human body and it's processes will change. The way doctors see the human body today, in the future could look as obsolete as the days of the four humours.

If you are still reading, good luck in you endeavours. I hope you find some of your answers soon. xxx

Mygeordiebud profile image
Mygeordiebud

Just ordered some vitamin tablets and some high strength CBD capsules hopefully these will help as well

Heartofgold profile image
Heartofgold in reply to Mygeordiebud

I have those as well as wax cookies - you'll be feeling great in no time. Just to be safe, don't drive with those.

Chingona profile image
Chingona in reply to Mygeordiebud

Yes!! I hope they help. I didn’t realize how much cbd oil was helping me manage scoliosis pain. I take very low thc and high cbd it’s been very effective in seizure management. Once I bought a low cbd because it was cheaper and I just didn’t think it would make a difference and I was in so much back pain until I finally couldn’t take it and bought the 600 cbd and I immediately felt pain relief. It’s funny even after the success I’ve had with thc and cbd, sometimes I think we’ll im feeling so good I don’t need it anymore and I always end up feeling miserable again. I never really believed in the healing power in marijuana I just thought it was an excuse for stoners! Ha!

tabey profile image
tabey

Dear Mygeordiebud

I really sorry your having such a horrible time at the moment.

just rest when you can and i really hope you get a break from it soon.

best whishes

Tabe

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