Big pain surge....
 

The last couple of days haven't been extremely horrible. I've been busy and distracted, and the pain level has been more bearable. Infact, there were times yesterday when I even forgot I had neuropathy, and that sure is rare!

Last night I went to bed and about a half an hour later, I started feeling burning, searing, and shooting pain practically all over my body. I even had new pain in parts that I have never felt before. I was scared and upset and got up to sit in the living room. How could I have had a better day and then had such a horrid night?

I started thinking about what I did that day. Of course I could say it is just the progression of the disease. Other things did dawn on me though. I had eaten way too many sweets and junk food that day. I had a candy bar and later on a bowl of ice cream that night. I rarely would do that. The other thing is that just before bed, my husband gave me a deep back rub, up and down my spine. Now even though an MRI of my lower spine stated that no nerves were being compressed at the lumbar region, my back still hurts like hell from the neck down to the lower spine. My back also burns a lot. I really need to also have an MRI on my thoracic and cervical spine as well. Finally, I took some new vitamins that were recommended on this site, and I doubt that caused it.

Being new to neuropathy, I also wanted to ask about flares. Is this when one's neuroapthy flares up at certain times, or does flaring come from a certain kind of neuroapthy?

Also, I don't think the 1800 mg of gabapentin is cutting it. :(


It's all so depressing, as I am sure all of my fellow neuropathy sufferers know. Can someone remind me again about those who have gotten better in spite of experiencing horrible pain? Like my name, I need to have hope.

Thanks for any thoughts and input...

for me...
 

Flares are often tied to food.

Certain foods will certainly flare me.

Hope 15 - ask your doc about increasing your gabapentin. That might help. I tried gabapentin but changed to Lyrica and am having more relief from pain. I also take amityrptilene at bedtime with tramadal for breakthrough pain. As far as flares, mine got worse when I had alot of sugar so I stopped that. Also, I used to like a cocktail every now and again. Alcohol bothers me also. However, my biggest offender seems to be work. When I have a very hectic day a work all heck breaks loose with my feet/legs/hands/arms.

How long have you had neuropathy? Hang in there!

Thanks Leslie. My neuropathy came on in full force around the first of November last year, so I have only been dealing with it for about three months. It first started in my upper back, then down one strip of my left leg. I then felt terrible burning in both legs, from knee to ankles only. I went to the neurologist, who took one set of blood tests and did the MRI on my lower spine and said everything was alright in those tests and gave me the gabapentin. I found him most difficult to talk to, so I left him and have been waiting for a second opinion from a university hospital, which will happen next week. My neuropathy spread almost around my entire body in only six weeks after the onset. I have it all over. Surprisingly, I am only having a little of it in my feet, at least for now. I currently have no weakness or numbness now, but it is early, I know...

Though I am new to neuropathy, this is my third major pain and or torturous health condition. I agree about the gabapentin, a raise in mg, or new med is definitely called for...

IF possible? Time to go and get a 'second' opinion.
 

Another doc, with different training and/or philosophies might just be the one you need? However, it depends on where you live...if this guy is the only game in town, it's rough. Go see a rheumatologist? Why not?
Besides, that can be cheaper in the long run than just 'going with the flow' and finding out much later [in my case too late] that the damages were doing.
Just NOW, before you even make another appt. elsewhere, ask for [or DEMAND] copies of your test results to date. Blood tests, MRI's the whole shebang. It may cost you about $.50 a page? But Then YOU have them for ever... And make copies for any other docs DO not ever give up your originals, they are precious. Still in all, new docs ALWAYS want to do the same tests over 'their way'. Each has different standards- and they all want a piece of the insurance pie. Sad but true fact of life.
As for treatments, some docs are in the dark ages and only prescribe neurontin/gaba... But, there are a whole slew of meds [OVER 50+] listed up in the 'stickies' as to what all has been tried and can be useful. Don't forget, each of US is different in what we can and can't tolerate.
I didn't do well on the neurontin...I was sleeping 14 hours a day and the neuro I changed from wanted to up my dose from 2400mg to MORE! I said NO way! Somehow? 5 hours of awake ness just isn't enuf to be HUMAN? Also, the hallucinations as a s/e were enuf for me? Changing neuros was the BEST thing that happened to me, two 'second opinions' essentially saved my life!
I hope this helps, you are early compared to me in my 'awakening' to other opinions? It took me 9 months [don't go there.....!] and I am ever grateful that my reason came thru and I got those 'opinions'!
Do NOT PANIC yet! Just go and seek the right guy you need! :hug:'s - j

Thanks so much dahlek. I so agree with you. When the first neurologist I saw (who by the way was a specialist in PN) turned out to be so disappointing, I marched right back to my primary care doctor and told him I wanted another opinion. He was very understanding and gave me a referral to a university hospital. I am getting a copy of all of my tests for sure, and will be prepared with all of my questions. I guess I am going through what every PNer goes through. I am frightened of the pain, scared that it will become unbearable, scared that I will be disabled someday. I know every newbie goes through that. And like everyone else, I just hope that I can maintain some kind of quality of life. Sometimes I just cry, not only from the horrible pain, but from the fear and the sadness that many of the plans I had in life will most likely never happen. I try my hardest to stay calm, because also like so many others, the more upset I get, the worse the pain hits. I can accept a lot, as I have had to face many challenges in life, but I pray to God that at least I can get the pain somehow under control, or at least a lot better. Thanks again for the encouragement. :hug:

The dreaded ice cream
 

Neuropathy is a roller coaster and it is sooooo frustrating. Sometimes it is so hard to pin point what causes a flair up. But I do know that ice cream does me in big time! I also find, that if I have more than two diet sodas in a day...or as we say in the midwest "pop".....it also appears to play havoc with my feet. I've found Lyrica to work better than neurontin. The only real problem that I have with Lyrica, is the sex life is totally in the toilet! Zero sex drive! I really feel for my wife, but, until they come up with another med that doesn't add 20 pounds to your weight and zap intimacy...I will stay with Lyrica.

jakatak, sounds like you and MrsD have given something for me to think about when it comes to certain foods, so I will have to be on the watch out. I have also heard so many people are getting relief from the Lyrica, but I do worry a lot about the weight gain if I ever have to go on it. Is it because it raises the appetite, or it just adds weight on its own? God, I so want pain relief that I may try anything even though gaining wight is the last thing I need with high blood pressure. The loss of sex drive, is that with women too?

Hope? I'd go outside the 'box' of ....
 

references that your first neuro gave you... There are many good, great and above average neuros in your area that if you do research on could be useful. That the neuro gave you a bunch of 'names'? means only that those are folks who think like he/she does!
Check out All area hospitals that have neuro depts, and research on neuro issues.... check out your health plan and see who the 'preferred providers' are, if you aren't in one of those plan types? Pick the brains of your friends. Then go the the hospitals 'Find a Doc' area and read up on their credentials... THEN web up their own practice web sites...THEN web up Pub med or just plain WEB up their names and see what papers they are on, or have contributed to. How those papers are presented can give you a LOT of insight as to how they approach things. That aside? You do not have to see the Great Guru God Neuro! The associates and such try soo much harder and have a bit more time to spend with YOU! .. Call make an appt, and when making the appt, ask questions about concerns of your own Medical Issues as to which doc would be most suited to you. It's surprising what you can find out about any med office in how they treat new patients! If the office is either lackadaisical or tardy in calling you back? Call again, noting when you had called before and that there'd been no response. Such offices SHOULD ALWAYS be professional and prompt in calling back. Any delays are indicative to how they mite treat you in the future...
Yeah, that FEAR thing is a big bad gizzley bear just behind you! As Mrs. D has said? Sometimes, foods can be triggers - and to carefully eliminate each possible problem food can be a dull thing to live thru? Stress can be another. But, in the doing, there is some KNOWING....The FEAR issue is a major motivator to get things sorted out, at least, in MY estimation. The more you understand about the processes, the better it helps to cope.
Just put that fear to work FOR you and don't let it paralyze you. It is very easy to collapse and do lots of things you shouldn't because it's, well, easier?
Hugs and hope always! - j :hug:

Thanks again dahlek, such good advice! :)

typical foods:
 

MSG

foods that release histamine (you can Google these)
http://www.nutritionlondon.net/phdi/...ocument&part=4
http://www.urticaria.thunderworksinc...whistamine.htm

nightshade family

Nutrasweet (because of the aspartic acid)

Foods high in arginine (if you suspect viral trigger)

Foods very high in fat (this thickens the blood and impairs circulation for hours after eating)

Keeping a food log will help.

I'd go back to early November and see if you can find a trigger:
vaccine (flu?)
illness
injury
travel to another country
new RX drug

mrsD, Thanks. I am really putting on my thinking cap and trying to remember what happened around the time I was stricken. I was wondering, can a drug that someone has taken for a long time, or an injury that occurred a few months earlier still cause neuropathy later on? Or, does that drug or injury or illness have to have happened more or less just before the neuropathy hits? I think I will try and put together a time line of events in the months previous. Maybe I can even post it and some of our knowledgeable posters such as yourself can spot something. Everyone here has been so helpful. :hug:

Crazy
 

Hi all ,I have the cold,wet,tingly sensations in my feet and knees,legs also weak and don't feel like they will hold me up sometimes,I have recently got numb,wet, cold ,tingly feeling in my bladder ,has anyone else experienced this ,,thanks