Can't take it anymore .
 

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. :(

hello feather bullet
 

:Boy(angel-flying):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:hug:

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 - 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!

Hi Feather
 

You have my sympathies. It sounds as if you are really struggling. You are right a lot of people here are older than you. For example i am 40 but I have had this for 8 years and it's never a nice thing whenever it happens.

The thing I want to say is that over the 8 years I have been on this forum, I have seen many people after 3,4, or 5 years disappear. Then they have written to advise that either they have recovered or they have recovered enough to lead a normal life again so they move on from here. I remember private messages from a few of these people and they told me that they thought recovery was impossible, but they eventually recovered. You can't loose hope. I too have lost friends because of this illness but have made better friends in the process. I also have body wide PN, Graves' disease,open back surgery, foot drop, anxiety, and a few other bits and pieces. I wake up each morning not really knowing how I am going to feel, also living with that uncertainty. But I am still here by the grace of god, therefore I must make the most of my life. You have hit a low point now, but you are a strong person and I know you won't give up. You have a lot of years ahead of you, and one day this illness will be a distant blur. Don't give up, and getting down is quite normal. It's ok to feel sad now and again. I stress the fact that you may need better pain management. Also it sounds as if you can use some distraction from all this too. As crappy as you feel you should try to get your mind off of this as much as you can. Watch comedies,cook, go for pleasant walks, talk to friends (even if only on phone). Try to get some sun, read a good book. If you want a laugh I strongly recommend the book Handbags and Homicide. The entire time I was reading that book I was giggling and I totally forgot all about my aches and pains. Funny that huh??

Yes, it is alarming to me too, that so many younger people are appearing here.

Pernicious anemia will show up in younger people commonly, and so will CMT. But many coming here don't have either IMO.
PA can be autoimmune with antibodies attacking the parietal cells of the stomach, leading to poor or no absorption of B12 from food. Or it can be inherited, either by itself or the tendency for autoimmune disease to be inherited.

I think it is the push of vaccines, and RX medications doing it.
Add to that pollutants in our environment, and you have a recipe for PN. I just read about a neighborhood in New Jersey sitting on a dump of toxic chromium.... that is being investigated.http://abclocal.go.com/wls/story?sec...rld&id=9039277

Soldiers living on military bases, are at risk too. The most contaminated living places are military posts. All sorts of toxins there.

And arsenic in water...people with wells, should be getting their water tested. Arsenic is common in the ground all over the world in fact.

So once PN was an old person's disorder. But not any more unfortunately.

At least we have this venue to try and help. But I agree it is a very depressing situation for mostly everyone who develops PN.

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

Featherbullet I would like to suggest that you find someone that you can talk to and be able to vent, scream, cry and complain to face to face. It doesnt have to be a mental health professional though it can be, but someone who will listen to you and accept you for what you are going through.

Aussie has excellant suggestions to do things to divert your attention away from your medical problems for a little while each day.

I have found looking at the long term and what may happen or could happen or what you might go through will just bury you. Take life in small bites. Keep putting one foot in front of the other and you will come out the other side.

Hi guys. Thanks for the kind words.
That is a lot of questions to answer. But basically my levels of b12 are fine and I'm still supplementing..even eating a bunch of meat when I'm a vegetarian at heart because I need the iron, b12 and protein. All my levels were fine though...and yes I take fish oil, and flax, AND China seeds. I'm fine there.
I've been a residential house cleaner for 9 years..so there is a level of toxin exposure there. But since I've been working for myself, I buy non toxic prpducts. My clients know I don't like harsh chemicals. If this was the cause, wouldnt every house cleaner or person that cleans their home alot develop problems? Anyhow, I'm getting out of it now because of the carpel tunnel.

I have psychiatric problems as well so this is just all too much for me. I've been chronically depressed and anxious since I was young.
My thumb is losing feeling as we speak, and I have pain all along my spine ..right down to my tailbone. I NEVER know how bad I'm going to feel, so I've decided to stop making plans.
The MRI isn't for another month, and then who knows how long it'll take until the results are in. I just don't want to wait any longer. Now waiting to see another neurologist, and it could be 9 months like the last one.

I've done all the blood tests, I've never had shingles,the CT scan of my brain did not show any abnormalities. My guts even hurt. They burn like hell..all the way up to my chest. I tried antacids but they didnt touch the pain. It burns when I urinate..yes I know..baking soda. :-) not always convenient ..
My life revolves around my pain and sadness.
I was motivated up until now..exercising, socializing, dating even. But I am not prepared to put someone through hell dealing with my life.
Oh, and I do not drink. At all..the only drugs I take are the ones prescribed. I do smoke, but the doctor says that is not a cause for neuropathy..just could delay the healing... but then he also said that with the stress I have , not to focus on quitting.

I'm writing out a list of things that will need to be looked after, once I'm gone. To make it easier for my family. I see that I bring them down ..and they feel helpless. My whole life has been problems..

I thank everyone for their suggestions, but I have tried them all.
I have a pass to the YMCA,but have to cancel it because I can't afford it. I have a pain psychologist, a case worker,all covered by OHIP( Ontario's health plan) I don't eat gluten and have been through all the food testing..I eat healthy shakes every day..Im quite thin as well.

I don't have insurance or a cent in my pocket..I did try acupuncture when I was working..it did nothing either!.I try distraction but the pain always wins. I'm tired of being strong..this is not going away and I don't feel up to battling my way through every single moment of my life. I don't have kids or even a spouse..so I don't really have anyone to stick around for.

I'm happy to hear that some people have recovered..and I wish you all the same. :-)

Hi Feather
 

I disagree on the dating part. You should date and you should try to enjoy that aspect of your life. Let others decide what they can handle and what they can't handle. You would be surprised. I have been with a man going on 3 years now, I call him my husband because this how I see him. Believe it or not he is an athlete. He plays many sports and is an avid golfer and tennis player. I call him my muse because his drive has rubbed off on me and I have become athletic and physically fit despite all my ailments. I am now even living out my dream and dancing classical ballet.

I felt the same way as you initially, but it was my father who gave me a good shake and told me that everyone deserves love and to let others be the judge and to stop making people's mind up for them.

So now I am passing that on to you. You are a young woman with a lot of life ahead of you. Don't stop dating, companionship is very important, and can be very healing as well.

featherbullet - I found some phone numbers that you may be able to call if you are feeling overwhelmed http://www.suicidehotlines.com/canada.html You probably aren't as much of a burden on your family as you think you are - families are supposed to support one another, and I bet it's the depression talking. We all go through hard times - we are all human and sometimes we just need extra support. Don't feel guilty for that!

We all know how you feel. This is a pain in the butt, however we must keep trying to find an answer. I know you're going through a hard time right now, but just take each day at a time, as hard as that is. You're doing all the right things (seeing a neurologist, being on this forum, getting an MRI) and you never know what is around the corner.

[QUOTE=featherbullet;97097

I'm writing out a list of things that will need to be looked after, once I'm gone. To make it easier for my family. I see that I bring them down ..and they feel helpless. My whole life has been pr

I don't have insurance or a cent in my pocket..I did try acupuncture when I was working..it did nothing either!.I try distraction but the pain always wins. I'm tired of being strong..this is not going away and I don't feel up to battling my way through every single moment of my life. I don't have kids or even a spouse..so I don't really have anyone to stick around for.

I'm happy to hear that some people have recovered..and I wish you all the same. :-)[/QUOTE]

Hi Feather,
I really feel the need to respond to your statement concerning writing a list for your family members and making it easier on them.
I am a family member of a person who committed suicide. I can promise you doing that will not make it easier for them then having you here.
My sister lived in pain due to severe Rheumatoid Arthritis. She also got addicted to drugs and alcohol trying to get away from that pain. She too thought the only way out was to leave this world. She apparently thought we all would be better off without her and her problems. We are not!!!! You see my sister took a part of my heart with her when she left. Please if you feel you don't want to keep going , it for your family. Suicide is never the answer. If only the people who do it could look into the future before they do and see what it does to their loved ones and friends. My mother will never recover from this. Basically, she is just waiting to die so she can join my sister.
Please trust me when I tell you that no matter how much trouble you think you cause your family, they would not want you to do this! Please get yourself some help!
Pick up the phone and call the hotline Boogirl sent to you. Your family will be so grateful that you did.
hopeful

Hi feather
 

don't give up. There are physicians that can and will help you. Also the YMCA has a scholarchip program for the people who can't afford it. It is free to go there, and they don't turn anyone away. Good way to make friends and try a swim. You are not a burden to your family. Keep coming back here for support. We will try to help on NT. All pain patients feels that way at times. It is important to have that good support team. I care about you. ginnie:hug:

Hey everyone. I'm still here:o
I have a pain psychologist, a case manager, friends and family, a good GP..but am still getting nowhere. However..I just got approved for the fentynl patch and will be switching to that tomorrow. Honestly..if it doesn't work..there is nothing better.
I had to put my YMCA pass on hold because I'm in so much debt. I also don't do public pools. :/

My spine and feet are on fire..feels like my body is not even my own with all the other pains, weakness, etc. I'm only comfortable on my couch with ice packs on me.
One day at a time eh...
If the patch helps more and disability approves me..I stand a chance..but things don't seem to go my way
I'll let you folks know. I talked to the psychologist about the suicidal feelings . I've already called a crisis line..but at the end of the day my body is still on fire so no amount of talking in the world helps that!!

I hope that one day there will be better treatment for PN. I'm on the first line medications and am still. In agony..so that is not so impressive is it!!!
I don't even know the cause yet...that could take months.
I'm really rambling..I'm sorry.

I appreciate the support. Love to all of my fellow sufferers:hug:

Hi feather bullet
 

Talk here all that you want. I care about you. I have PN too and fight the battle of depression. I hope you will keep coming back here. I also hope that some good doctor will help you more. No council in the world works unless you have a good pain management doctor along side. I so hope it can get better for you, and that you don't loose hope. ginnie:hug:

Hi Feather
 

I have read through your history and I notice a few things. I have no medical background, but I will give you my opinion. It sounds as if your pain sources, are multifactorial. The numbness in your hands can be coming from your carpal tunnel syndrome. You mention that you are slightly hyperthyroid in an earlier post. I too am hyper (slightly) on paper. Very low TSH and at the high end of reference range on my T4. I lost over 10 kilos in body weight and half my hair. I would eat 6 full meals a day and kept losing weight. I thought I had cancer initially. Hyperthyroid does not mean you only have a fast metabolism. Every cell in your body is affected by the metabolic rate at which the cells use energy. Nerve cells are very sensitive to hormonal imbalances. A lot of Graves patients have myopathies and nerve related problems.

Your pain in your legs and butt can be caused from sciatica and spinal problems. Also I believe that nerves can communicate with each other and i sick nerves can signal healthy nerves and cause more havoc. I got whiplash last year in March after a car accident and had a bad PN flare. Before the whiplash I was pain free for 3 years. The 3 years I was in remission I was leading a normal life again. I had communicated with a few people on this forum via emails who also left because they recovered after 3,4, or 5 years of having this. This is how I know recovery is possible for a lot of people. Anyways, after my car accident this thing came back. It started in my upper back and then spread. It lasted only a few months and went away. Then later in September of the same year I had 2 viruses, and also started taking the anti thyroid meds. I was doing yoga in October, and my butt went totally numb. I went to hospital and they did MRI, and it did not explain numb butt. The numbness spread and it was progressively getting worse and worse to where I am now. It's very hard to figure out. Is it thyroid, is it the virus, is it my spine problems.... I find that regardless of what caused this, treatment options for most are quite similar. Doctors don't intervene too much because they work under the assumption that the body can heal itself. They give us meds to calm the symptoms. If I had to guess I believe my issues are autoimmune/ hormonal since I already have one autoimmune disease already. Reading through your history you have had many hormonal problems both Gyno and hyperthyroid. Aside from not being able to figure out what is wrong with your body you suffer from chronic pain, and I see that as your most debilitating factor right now and why you feel so down. You may need to switch and swap the meds you take until you find one that works better. They also use tricyclics (sp) for PN and they can be very effective.

Recently I stumbled on a PDF "The Intractable Pain Patience Guide to Survival." I just googled chronic pain and it came up. It's written by a doctor and is an instruction manual on how to cope with pain and illness. I highly recommend you read it. I can't send you the link from my iPad but I can send you the link if you can't find it by googling.

Before I sign off here and go to work I need to let you know that you are ok mentally. Being down is not a disease. You are depressed because you are sick. It's completely natural and it would be unusual for you to be completely content and be the way you are now. Your emotions and response to your illness are actually normal. What you have to be careful of is feeling despair to the point that you want to harm yourself. I believe the body knows how to heal itself and can heal itself but sometimes it takes a lot of time. It took me 2 full years to recover from spine surgery. I have foot drop and they told me that I will not regain function in my foot. 2 years later thanks to ballet classes I am using my foot normally and can dance. People have been cured from worse diseases than this and it all starts with what you Believe. If the mind believes the body is sick than the body will remain sick. I am telling you that you will recover. You will be one of the ones that leave this board eventually and go on with your life. Since you are still here 2 1/2 years later and walking & kicking you will be here a long time to come. If that burning pain were gone from your body, I believe you would feel calmer and be better functioning. It's the burning pain that has gotten to you and seems to be the key problem. I suggest you try to get your pain management to address that and get that under control. Believe me when I say it can go away. Please don't loose hope. You are not alone here.

Hello Featherbullet,

I'm praying for you that you'll get some relief physically and hope in your heart.

I know the pain can be tough and it's not hard to feel depressed. But please believe, you have so many who care about you. Don't do anything to harm yourself. It'll be two weeks tomorrow since a cousin of mine committed suicide and it has torn so many up inside, friends as well as family.

Don't give up. Keep searching for ways to get help, both mentally and physically.

We're all here for you. Hang in there. I'll be keeping you in prayer.


LillyLee

Below is link to chronic pain survival guide
 

Wow-aussie99 thank you SO much for this.
Honestly, best gift /tip/support I've received yet.
I've forwarded the link to my pain management doctor. Hope he changes his mind about always trying to keep people off opiates and just meditate.. HATE that. This is proof that its dangerous to be off meds with IP
Thanks again!!!!

Any time my feathered friend. And please do me one favour and believe me when I say many many people have moved on from this board due to recovering including myself for over 3 years. DO NOT, under any circumstance throw in the towel. You have so much life ahead of you,and you will recover. Please just keep on telling yourself that.:hug:

Yes, keep us updated featherbullet. And we're always here to help.

I will do my best. I will try everything possible to alleviate the pain, find the cause, manage the symptoms, ...even if it means crashing once in a while I guess..

I have a wonderful family to live for ( not my own..I mean my parents and sister, as well as niece)
If I didn't have them I may not have made it this far.
Thanks everyone. You got me over the hump. Oh and I start fentanyl today. Maybe that will take the edge off enough for me to move forward . Wish me luck:hug:

Wow fentanyl works really well. My pains down to a 1/10 for the most part.
This came at a good time. I'm able to focus on other things like a new job and mental health now. Wohooo!
I recommend ( for the opiate tolerant only of course)

what an uplifting presentation telling it how its is with no BS. IP is a quick ticket to an early grave due to organ damage instigated by the bodys inability to remain neutral during periods of chronic pain and turning on itself

Interesting analysis about soldiers dying quickly without morphine, not through blood loss or gunshot vital organ damage but due to the body unable to deal with the pain itself.

Feather - you are not alone! I do know it can feel like that a lot though when dealing with all on this board do. My issues started when I was 27. I remained undiagnosed for 5 years, with all the tests the doctors did came back negative. It was incredibly stressful, and painful during that time. I lost work, self-esteem, faith, and general trust for anyone in the medical world. My depression was spiralling to a point it was physically hurting me by making my symptoms and life in general worse. I avoided psychiatric medicines as much as possible and would tell the doctors if they would just find/fix what was wrong the depression would go away, as I am a generally happy person. Finally, I gave in and tried Cymbalta, as the doc sold it to me as a nerve medicine, not just for depression. (it happens to be on the list from the link above for meds that help too) My depression lifted, and it helped in so many ways. I could leave my house again, and be active in recovering from the horrible flairs I had been having at the time. These days, I'm having a new/different (for me) flair, and I feel myself spiralling down again. It helps to talk to people. To reach out. So posting here was a good start. You are not alone. You are even inspiring. Today, I set up an appointment with my therapist, because my own spiral is growing too large for me to handle by myself, or burden my family with. Your post made me think about me, and what worked for me in the past and how I was feeling today. Now, I'm 34 and I still have many "why me" and "I'm too young to be this old" days. Take one day at a time. Keep a journal of what works. Keep lists of whqt is good in your life. Or just good for that day, or maybe even what's good for that moment. Just remember, you are not alone.

Hi Abby -comforting to know you relate. Both with age and with depression. I'm glad that cymbalta helped you for some time. I tried that one..after 5 days my bladder went into spasms and I had to stop. Sigh..I never do well with psychiatric meds. I have some 5 htp thattge pharmacist said was safe to try. The next time I get suicidal or depressed, I will try it. You cannot mix it with anti depressants though.
Luckily the fentanyl is helping a lot. Its strong and I know not everyone believes in taking them..to that I raise my middle finger because I can't function without them. Doctors are scared to death to prescribe them though here in Canada . Luckily I see a pain specialist.
Anyway I hope you get some support during the time.
Its great to have a place like this to come and get motivated again when we want to give up.

And regarding the link to the IP patients guide...I completely understand how pain could kill a person. Scary isn't it?
Feather

I'm really glad you have meds that are helping. Keep up the good fight!

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

Hi there, I feel your pain, trust me. I am also dealing with burning pain (nerves) and I have found that the least xr-mri-ct scans you have, the better. When I went off the painkillers it was hell for few days (oversensing) hell on earth.
However once the postwithdrawal symptoms receded, I started to feel much better (emotionally, mentally) the pain is back to being very bad however, I have found that a combo of
Voltaren with 100% lavender lotion immediatly eases the nerve pain and the burning sensations.
The problem with voltaren is that it can be mean on your stomack even if is topically used.
As a result, avoid drinking coffe, alcohol and any other irritants while on this treatment..
YOU will be able to sleep and to feel better (less is more, no more meds, they make you sicker) of course talk to your doctor to wind off painkillers, is not impossible is more the fear of people, use over the counter tylenol back pain while on withdrawals and maelox and you will be fine.
it is better to feel the pain but be sober and foggyless during the day, then feeling the pain and feeling like dead walking. I hope this helps!

More bad news : 1) got denied disability for the second time
2) After I ran out of oxycodone I began going into withdrawals. Sweating, diarreah, increased pain, headache,fatigue.. it seems that the patch alone is not enough .
My pain doc is away so I am once again secluded and depressed.
I don't want to go to my GP and look like a drug seeker/hypochondriac since I was there a week ago for thumping in my ear, and the week before for chest pain.
Need some hope

Doc should have given you enough oxycodone to get through the withdrawals. You can't just stop cold turkey. I was addicted to Percocet after a surgery and it took me 6 weeks to get off of it, at the end I was only taking 1/4 of a pill, but it was the only way my body would let me. I was shaking (like full body back and forth) and absolutely freezing just a few hours into it.

This discussion mentions phenergan (allergy med) to just knock you out during this time. It goes over people's experiences with withdrawal and how long it took:
http://www.drugs-forum.com/forum/showthread.php?t=32574

Does your doc have an answering service? I'd call his office and find out. He can call your GP so he can write you the prescrip?? Or just don't care about how you feel around your GP and call anyway. This is not a good feeling and it sucks that they didn't prep you for coming off of it.

And what the hell about your disability? I'm so sorry.

hello feather bullet
 

I know the pain of being rejected for disability. I went three go rounds before it was granted. Also weened off morphine, so I certainly know about percocet and the withdrawls with that. Your doc. should have given you something to ease your way off the drug. I received kolonopin. Have hope that the sensations will not last, and that there are other medications that have less bad side effects.
Hope you have legal reps. for your claim. don't give up feather, it will happen. Most people I know have indeed been rejected a few times. I know how devestated you fell however. This system of ours, makes us suffer too much. You will be in my thoughts and prayers. ginnie:hug:

Hey guys. Nice to see you
So to clarify, I was on oxycodone, but it stopped working..so he switched me to the patch, and said to just taper off the rest of my oxys. It wasn't planned out well. Now I'm relying on an old script of morphine for the breakthrough and withdrawals. Clearly I meed more than the 25 mcg fentanyl patch. It all sucks so bad. My mind is not clear , and there are so many ups and downs.Honnestly, I suffered with severe depression before I had pain, and now ..it is a daily battle with very bad thoughts. I also have anxiety and a personality disorder which make me very unstable to begin with.
My pain doc is away for the week, and my GP does not prescribe opiates. Also, my pain doc does not believe in breakthrough meds. He thinks people should meditate.argh!!!

Thanks for the link. I am part of that forum . I am not going off everything, just the switch from oxy to fentanyl. Some doctors are now saying that opiates cause more pain and are trying to get everyone off them. But now I am hooked, and there is no alternative besides lyrica. * screams and cries*
I hear the disability ( here it is called ODSP), is not easy to obtain. I have been warned that it may take up to 2 years and a few tries.
Honestly, by that time if I am still so disabled, gosh...I don't even know what to say there.
I should have applied 2.5 yrs ago when this started. I didn't get a proper diagnosis until last month though. Its all a big catch 22. Too sick to work, but have to to live. Can only do so much to help myself with limited funds. I'm 29 and living off hand outs to make rent. I couldn't finish school because I couldn't pay.
I am just stuck in a nightmare that never ends. I am not usually the type to pray, but I need a miracle. I am just not getting anywhere but deeper into despair.

Thanks for the support. :hug: I'm grateful to vent and have people that understand completely ( except maybe the mental illness)

:hug::hug: just thought you might need a couple of hugs and to let you know I am praying for you and hope you get some relief, I know what you mean about lyrica ppl wit depression should not be on it from what they say take care

Hi feather bullet
 

I think I would change doctors. sounds like they left you hi and dry with nothing to help you through this. I go see a physiatrist, who deal with pain first, then try other things to help too. Please be careful with adding morphine without a doctor. That drug is the worst when weaning off the medication. I was on it 12 years or so, and when through hell getting off it. Try your best not to take it OK? If you would have to cold turkey off it, you would be in a world of trouble. So far I don't think that much of your physicians for not guiding you better. Wish there was something I could do for you. ginnie:hug:

Hi I am sorry I am late to this thread and am sorry about your pain. When I came to this board 6 years ago I was 28 as well. I was in bed 24/7 crying through pain. I was going through all the dx testing and possible treatments in and out of state. I was dx with PN but RSD as well. Unfortunatly my pain has spread and the treatment I have had and meds have not helped. I took a break from treatments because some made me worse but now am going to start up again. I also before this condition had anxiety and depression issues. Over the years of dealing with this the way I cope has changed. I had psych care because at one point of this condition I had so much happening to my body and so much unknown that I became so fearful and anxious I was not coping at all. Also of course how the pain impacts everything from not being able to work,lack of friends,sleep etc. I had a pain doc once say to me on the good days do the most you can and on the bad days do the best you can. That is what I am trying to do. I know it is easier said then done.
Ok enough about me on to you. I did not see you mention but where is your mom or dad? For myself if possible I try to go to the doctors apt with my mom. I think they take you more seriously with another person. Also for the support. Do you have anyone that could do that with you? Have you looked online for support groups whether it be for pain or even depression?
I am sorry if I missed this but before you started feeling the pain or in your life in general did anything happen like did you fall,injury,any type of abuse such as drugs or drinking? Anything that looking back you may have brushed off?
I wish I could offer more but I hope you feel better and try to take one day at a time.