I'm sorry I can't help about the headaches, I don't get them. Some intention tremors and neuropathic pain, such as you are feeling in your feet, are treated with anti seizure meds, such as gabapentin/neurontin, tegretol I believe, carbamazepine also the diabetic neuropathy med lyrica.
As far as the joint pain, some of that can be nerve related. It takes a little investigation to find out if that is the cause.
Certainly be very careful with these drugs, and yes, investigate. More people will give you better answers.
Good luck
Erica
To the best of my knowledge, the pain that is associated with MS is nerve pain. This nerve pain as a rule cannot be controlled with narcotics and I am speaking from experience.
I have been diagnosed with what is called Paratrigeminal Neuralgia and have severe pain in my head. This is being treated with anti-seizure medications with better results than any narcotic I have tried. I am currently on 900mg/day of Tegretol (Carbemazepine) and 300mg/day of Lyrica.
A popular drug for the use of nerve pain is Neurontin. I was on Neurontin for the pain in my heels and legs however the side effects for me outweighed the pain relief. It, of course is not the same for everyone.
It seems strange to me that any doctor would prescribe a narcotic to someone struggling with addiction.
The doctor that prescribed these meds to you, is she just your pcp/gp or is she a specialist of some sort? The reason why I ask is that if there is any indication that you could possibly have MS, you should be referred to an MS Specialist immediately and the MRI forwarded to the MS Specialist to read. An MS Specialist is trained to read an MRI to find lesions associated with MS and he/she would also have the experience to know what to look for that a radiologist or your pcp/gp would certainly not have!
I have been in the ER in the past with severe pain due to the Paratrigeminal Neuralgia and I was given morphine and to be honest with you it did not alleviate the pain whatsoever...it only made me think differently of the pain...the same way Percocet does.
If you and your pcp/gp feel that there is a possibility that you may have MS, please ensure that you get a referral to the MS Specialist for starters. If you are unable to get a CD of the MRI of your brain, the Specialist may request that you have another. Then you will be required to give a FULL History and this is where a timeline can help a whole lot, both for you in that you don't have to try to remember everything while sitting in the office and that he has something to look at that is clearly showing your past history.
Then the MS Specialist will do a full in-office examination. This is a VERY important part of your search for a diagnosis as your doctor will be able to see your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. Once you have this done and if your MRI is inconclusive (or even if it isn't) the Specialist may suggest that you have a Lumbar Puncture. In this procedure, a small amount of fluid is taken from your spine and tested to look for Oligloconal banding which is a sign of MS. The fluid is also tested for a myriad of other diseases as well.
If you get this far and still have no diagnosis, Evoked Response testing is done to determine the nerves response to stimulus.
But for starters, I would see if you can get an appointment with an MS Specialist and take it from there. I can understand Cheryl Ann, your concerns about taking narcotics but if this pain you are describing is neuropathic pain...your doctor probably has you going in the wrong direction with the Methadone.
Lots of Hugs,
Rena
Hello, I just read your post, how long have you been in recovery? I ask this because sometimes if it is recent some doctors try to taper down so you don't go into shock from withdrawl. It sounds to me your are doing great with that and know the limits. That is GREAT. I would ask about gabapentin or lyrica, I take gabapentin like clockwork everyday. It really helps.
Good Luck,
Ada
Congrats on beating your addiction! I agree with all the above posts. I was diagnosed with MS on 07/30/07 after years of treatments for all sorts of joint and nerve pain, as well as cognitive symptoms that impaired my functionality. I had/have horrific headaches that no amount of drugs could completely stop. They would last for days and I was lucky to get a 24 hour break in the pain. I sympathize with you because I took anything they offered. My husband even thought about asking them to try prescription marijuana that they use on cancer patients. Thankfully, it didn't come to that. I took 600 mg Neurontin, 300 mg of Nortriptyline, and Clonapin (controlled sub) every day as well as narcotic pain meds. None of that even made a dent in the pain. The most effective pain medication I have found is Fiorinal which is also a controlled substance. I often have to take 2-3 but it will eventually stop the pain. My neurologist prescribed Amitriptyline taken every night to prevent the headaches. It seems to be working as I have had only a few, even the day after my injection. I no longer take Neurontin or Nortriptyline. I also recommend BC powder arthritis formula. My physical therapist suggested I try that and it often provides relief if I take it the minute I feel the tiniest bit of pain. BC has a strong dose of caffeine in it much like the Fiorinal. If a headache develops, I can still take the Fiorinal but if it doesn't, I haven't wasted a precious tablet (you can only get 30 each month).
Like Rena, I cannot stress strongly enough that you need to see a neurologist that specializes in MS. My neurologist was appalled that I had not been diagnosed sooner because the symptoms were blantantly obvious. I changed my primary doc who referred me to neuro. She said she knew just by reading my chart before she ever saw me that I had MS. While I was in the hospital with pneumonia in 03/06, I had an MRI because of the headaches. There were several lesions that even my untrained eye could see. I had a lumbar puncture to confirm the diagnosis of the on-call neurologist who said it was definite, no if, ands or buts. I had to wait a week for the results during which my entire family went through the "grieving' process (for lack of a better word). However, when the LP results came back she called us at home and said I DEFINITELY DID NOT HAVE MS and didn't need to do any followup on the lesions. I have since discovered that she is the "one to call" if you are in ER having a stroke, not one who should discuss MS in the hospital. My neurologist does not even do LP's to diagnosis MS because it is inconclusive. Find one you trust and are comfortable with because you will be together a long time.
I have a question for all of you. I've had recurring shortness of breath since '06 but in the last two months it has become chronic. I'm breathless at rest as well as something as simple as applying my makeup. I have also gained 25 lbs. in that two months. Does that sound familiar to anyone? My primary doesn't think it's related to any of the meds and none of them are that new. I had an ultrasound to rule out a blood clot. Any advice?
I wish you success in finding answers and conquering the pain.
Sonja
Sure sounds like you went through the ringer didn't you? I am currently taking 3 types of puffers to help with my breathing and my g.p. thinks it is due to my quitting smoking HOWEVER, I don't agree with her.
I didn't have any difficulty with my breathing until about 7 months after I quit smoking and it came on really sudden. I did go to ER at one point as it was VERY difficult to expel my air and when two different people listened to my lungs they discerned a problem with my right lung.
I am to be booked to go see the best lung specialist in the city and I can't wait. This is something that gets continually worse and is very worrisome! I also have gained quite a bit of weight since October 2006 firstly due to steroids and then due to lack of movement I believe! It is all very frustrating that is for sure!
I would consider having a lung function test done and if those results are inconclusive ask to be referred to a pulmonologist. That is about all I can suggest at the moment but I hope you get some relief soon!
Lots of Hugs.
Rena
WELCOME TO OUR CYBER FAMILY.
CONGRATS ON BEATING YOUR ADDICTION.
IF THIS IS NERVE PAIN,NARCOTICS WON'T RELEIVE IT.LIKE THE ABOVE HAVE MENTIONED THERES MEDS TO RELEIVE THE NERVE PAIN THAT ARE EFFECTIVE.
I AM ALSO ON ATIVAN,BUT FOR NIGHT TIME MUSCLE SPASMS.
I TAKE NARCOTICS TO RELEIVE PAIN,BUT THIS PAIN IS FROM THE AFTER EFFECTS OF CONTINUOUS SPASMS .
FOR THE NERVE PAIN I TAKE NEURONTIN.
TAKE RENA'S ADVICE AND SEE A NEUROLOGIST OR IF THEY SUSPECT MS A MS SPECIALIST.
THANK YOU FOR JOINING US,THIS IS A GREAT GROUP HERE.
T-LYNN
i too, sufer from horrible, constant head pain, for 2 1/2 years now. i take tramodol and
fioricet with codeine 3 or 4 times a day.i hate that i have to take it so much, and am concerned not only of my dependancy, but the toll they could take on my liver. I get that checked pretty often, so far so good.i tried neurition, didn't like its side effect on me, but I'm ready to try another form of pain control, another nerve one, and hope it could help.I would be over joyed at this time for releif finally
take care, and your doing good
Good luck on achieving adequate pain control, it can be very difficult. Careful use of narcotics CAN be effective in treating some neuropathic pain, but not all. Pain control is a very complicated issue and depends a lot on what exactly is the cause of the pain: the diagnosis of MS alone doesn't tell you the physiological cause of your pain. It could be directly from faulty nerve stimulation (your nervous system is sending out pain signals when there is no "real" cause) or it could be from muscle spasms, or it could be from overused muscles trying to compensate for the muscles that aren't working due to the nerve damage, and on a related note--it could be caused by mechanical issues, in that a physiological imbalance is causing the pain. In other words, if one side (for example) is affected more than the other side, then you have a mechanical imbalance. Or (ironically) your physical functioning could be affected by wearing braces, or affect your gait (the way you have to walk), or many other functional problems rather than directly by neuropathy. There are so many causes of pain that I can't list them here.
To top it off, every person is different in the way the react to or their body utilizes different medications. Given an identical condition what works for one person doesn't necessarily work for another. Worse, what worked before may not work anymore. That's why there are SO many kinds of drugs for the same conditions, and why the pharmacuetical companies are always developing more.
I for example, have had good pain reduction using the Fentanyl patch (Duragesic) EXCEPT for my low back pain. That hasn't been responding to anything lately. I also get muscle spasms in my legs, which requires a different medication. I also have osteoarthritis, which responds to yet another type of drug. Good pain treatment often takes a multi-faceted approach, and multiple types of treatments.
Try to talk to your doctor about your pain treatment and your concerns, but the most important question to ask yourself: DOES IT WORK? If it does, then count yourself lucky. And THAT'S all that counts.
Please try not to worry about your history of drug addiction. While it does put you at higher risk for addictive behavior, statistically, people who are in genuine chronic pain generally don't become "addicted" to pain meds. Addiction is more than a physical dependence on a drug (by which you would suffer physical withdrawal symptoms after suddenly stopping some medications). Addiction is a behavior, basically seeking the "high" or the euphoric effects rather than pain relief. The worst thing you or your doctor could do, even with your history, is to undertreat your pain. That could lead to despair and depression and in turn lead to using pain medications to treat your emotional symptoms rather than your pain and THAT my friend, is the difference.
Good luck to you.
klonopin is your problem, not narcotics. Klonopin is a very dangerous drug.
Methadone does have a extra analogue that helps nerve pain unlike other opiate pain meds so yes it may help your nerve pain unlike other opiate pain meds just be careful not to miss use it and if you find yourself having cravings to do so be honest with your doctor about it and also ask to have a geansight DNA test done this will show what meds will work for you based on your genetic make up meds work differently for everyone yes even opiate pain meds go to geansight.com for more information there is a enzyme that makes opiate pain meds work and some people have more than others people with less of the enzyme are going to be ultra metabolizers and and need there meds adjusted accordingly usually a higher dose persons with a high count of the enzyme will need a low does or none because of risk of overdose