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.