After 2.5 years of living hell, at 29 years of age .. After maxing out on narcotics and taking as much lyrica as I can function on, all the right supplements ,
Rest, time, tests , Losing relationships, friendships,putting immense strain on my family , being denied disability , and being terribly broke ...
I am out of hope , faith, and a will to carry on
I got the diagnosis of peripheral neuropathy.. But with no known cause.
In the morning, my hands are numb.. All of my muscles hurt and burn when I stretch. Burning from neck to feet .. That is relentless. I have tried all the lotions and potions. I can't just sit at home with ice packs all over me forever.
I'm not even 30.. Single , no profession because I had to drop out of school..
There is no hope. I have up on prayer ages ago.
Nobody wants to be around a whiny , negative person who is never happy and always in 24/7 pain.
I'm done. I'm just done. No desire to torture myself any longer.


Has anyone else ever dealt with crippling depression because of this horrendous disease?
Everyone I see on here is older .. No offence .. But my best years were still to come.


I had to get this out. Thanks for listening.

Featherbullet, I'm around the same age as you. I'm 27 and I feel like this has thrown a spanner in the works for my life plans as well. I've had to give up a permanent job as well, and my former boss would make comments alluding to the fact that I'm so young, so why am I having all these problems? Like she didn't believe me.

It is very understandable that you would get depression from this. I completely understand. If it were an illness that had a name and treatment, at least you could move on and tackle it. But it makes it harder when doctors don't know the cause, and aren't up to date with literature.

We have to keep trying. You never know what is around the corner. There has to be some cure for you and me, but we just haven't stumbled upon it yet. You will always have this forum for support.

*hugs*

Thanks for the reply.
I'm sorry that you too , have to endure this crap while still in your twenties.
It sucks at any age , but usually you don't expect health problems until later in life. My whole life revolves around doctors , pain, and drugs
I'm afraid I will overdose accidentally . That's only one worry.. And it's tempting to take more drugs than prescribed when they just don't cut it

There is no cure.. There might be one day.. But until then, I don't feel like waiting.

Yeah, it is hard to deal with it so young. I feel like an old person, which isn't fair. By I try to focus on getting better. However, I've only dealt with it for a few months so far. I can only imagine what it must be like dealing with it for years. I got tested for MS - but that turned out negative. In a way I was hoping for a diagnosis of MS because at least then I would have an answer, and also a "socially acceptable" one. When your symptoms are "back pain" or "nerve damage" people generally don't understand or think it's something that only older people get.

What medications are you on? Have you tried B12? (sorry if it's an obvious question) What type of pain/symptoms do you get?

Totally agree. Wish I had a name to the problem. Howeer , up until recently I didn't even have proof of nerve damage.
Yes , been tested for b12 and have been supplementing anyway for a long time. ( methyl cobalamin ) also take alpha lipoic acid .

Symptoms are burning all over ,weakness in arms and legs,numb hands in the morning ,mod/severe carpel tunnel in BOTH hands, general muscle pain .. It's likely that I have fibromyalgia as well.
Did a ct scan a long time ago on my brain to check for ms.. But now my neuro wants an MRI (April 27th)

I'm on lyrica and oxycodone. Oh and clonazepam occasionally.

You? I'm in Canada .. Where are you? I hope you don't have to deal with it forever.

featherbullet - how much methyl tablets do you take per day? I've heard stories of people needing to take 5000 mcg (or 5 mg) per day in order to heal. Have you had tests for pernicious anemia and intrinsic factor? Do you take fish oil each day as well (3 capsules might help). I've heard that this helps heal the myelin that is at the end of the nerves.

Before finding out about B12 I thought that I had carpal tunnel from using the computer a lot (I mean, who doesn't use the computer a lot these days?). My symptoms would be ok for the first 20 mins of waking up, then it would start. It gets your self esteem down because you can't go out anywhere and enjoy yourself, only staying at home.

Definitely get an MRI done if you can. I'm surprised they haven't done that already. Because an MRI is one of the ways of testing for MS, and even if there are no lesions on the brain, you might still have MS.

My symptoms are very similar to yours - muscle weakness, tingling of the arms, muscle pain, back pain, dizzyness, etc. But I'm hoping that B12 will heal that all. I'm from Australia. I think our healthcare system is very similar to yours.

Keep your chin up! There is bound to be something to work for you! My thoughts are with you!

I am so sorry you feel as bad as you do. I have been down that same road a time or too, and have to battle my way out of it. I am bi-polar, and it adds to the depression at times. I wish I could tell you there is a magic bullet to make you feel better. I too have PN though not as bad as what yours sounds like.
I know you are in pain. If there is any way you can keep mobile, it helps in the long run. do you have a compassionate physician who is doing all he can do to make you more comfortable? Have you seen all the best physicians you can? Have you tried a physiatrist? That is the kind of doctor I go to. They: treat pain #1, but also treat the whole person at a cellular level. I have been able to get off most all of my pain killers, with suppliments I didn't think would work....
I was not a believer in them at all. However after a year on B12 shots, and a few other things, the PN is reduced in the intensitiy. If at all possible, please look into this type of doctor. don't give up hope. You are right you are too young to have to deal with all this. I care, and if at any time you want to talk, I am here to listen. I wish I could help you through this dark time. You will be in my thoughts and prayers, even if you have lost faith. I'll send a guardian angel around to see you. I am older yes, but I hear your pain, and I want to help. ginnie

I feel your pain. Periferrial nerves can regenerate if the nerve has not been totally destroyed. Regeneration takes time and patience. My PN is thought to have come from alcohol. It can come many other things such as chemicals, shingles etc. I was in denial that mine came from alcohol since I ate very good and exercised daily. Since the nerves regenerate slowly,it takes a lot of FAITH and PATIENCE.

They say 3-5 years. If you are using alcohol, drugs etc. get off of them now! Go to a 12 step program, get a sponsor and work the program. Do not quit! If this is not your problem you need to see if there are any contaminants you have been around. Did you work around chemicals or are you still working around them? Hope this helps.

Featherbullet, I'm sorry to hear what a hard time you're having. I, too, have idiopathic neuropathy. I'm 41 and was diagnosed a year ago, though the symptoms were going on for 2-3 years before that. I'm lucky to have good insurance, so I've been investigating the possible causes--all kinds of tests and experiments and still no cause.

I was also diagnosed with fibromyalgia, which I think I must have had for at least 5-6 years. I just never knew what that aching in my legs was till I finally found the right doctor.

Three things that help me:
(1) Swimming. It's the only exercise I can do without pain or impact on my feet and I find it really helps fight depression and stress. I go 2-3 times a week, just for 30 min. You don't even have to swim well (I don't!).

Gyms can be expensive, but the YMCA is usually pretty affordable. I don't know where you live, but most cities have public pools, as well.

(2) I see a therapist who specializes in chronic pain. It's so helpful to talk to someone who understands what it's like to live with pain and fatigue and all the emotional issues that come with them.

Also, there are support groups out there, for both neuropathy and fibromyalgia and also for chronic pain sufferers in general. Talking to others in your situation can really help. I urge you to try it.

(3) Acupuncture. I go once a week and it has helped me a lot. Even if you don't have insurance to cover it, it's reasonably affordable at community centers or clinics. It also helps with depression and stress.

Lastly, you might want to try making changes to your diet. This is something you can do on your own--try eliminating different food types for 30 days at at a time and see if there's any difference in your pain. I've been trying a wheat-free diet for the past 3 weeks, as I know wheat/gluten can be a trigger for neuropathy. There are some great dietary tips on this forum.

Keep your chin up!

All the best to you,
APJH

Hi featherbullet,

Bless you ,I know how you feel -exactly. Lifes just been stolen away from us!. Just something that has helped me a little so thought id message you is having a fast acting med to top up and for surges in pain (breakthrough or spikes). As well as oxycontin , i have oxynorm (its fast acting sister). I assume your oxy is slow release - i find that doesnt cover the pain sufficiently.
I also take lyrica.I also cant function if i take too much - its horrid stuff. Have you tried topiramate?

A cream im trying is suppose to ease nerve/itching pain etc... Its Capsaicin cream. Ill let you know how it goes( prescription only).

Oil of magnesuim - i spray on joints - cant really say if its helping but anything is worth a shot.

Also im now on methadone for pain . It has helped a little.

Stay strong. As we read on site things can stabilise and even get slightly more tolerable

God bless x