| T O P I C R E V I E W |
| shawnsmith |
Posted - 09/18/2013 : 11:45:15
Fibromyalgia Breakthrough; Treat the Cause & Not Only Symptoms
http://www.envita.com/lyme-disease/is-fibromyalgia-the-real-diagnosis |
| 18 L A T E S T R E P L I E S (Newest First) |
| Cath |
Posted - 09/23/2013 : 05:14:04
Thanks Catmac. I know this isn't going to be easy. But I really need to do this now. I've been putting it off for far too long, and I'm pretty sure that the side effects are contributing more problems to my condition now. But I do understand what you're saying about the time being right. I think it has helped me when my pain was at it's worst, but even then I was taking NSAIDs alongside it. I managed to come off the extra pain killers a couple of years ago, and really believed in Neurontin's efficacy, so I'm not sure whether it was my belief in the drug that helped me most. When you put your whole faith in something it does serve for a while, but I feel that drugs are just masking my problem, and that I need to try to manage my symptoms without their aid. |
| catmac |
Posted - 09/22/2013 : 13:37:45
quote:
Originally posted by Cath
Thanks NA - this is really useful, and actually makes sense, given my symptoms. Guess I'll just have to grin and bear it for a while. But at least now I know this isn't permanent.
When I visited my Doc this week he had no hesitation in telling me to up my dose again, and actually told me that my symptoms weren't irreversible. When I questioned him about the side effects, he simply said, "all drugs have some side effects".
And thanks Birdie too. It's always good to hear from someone who has gone through the same experience and come out of it fairly unscathed. This really does feel like a very over-stimulated nervous system. I have also been trying guided meditations, and they do help a little.
Hi Cath
I too was on Neurontin (1200mg)a day. I completely agree with Birdie as I came off Neurontin in a very similar way. I reduced by 100mg a week. There were weeks where I felt I couldn't reduce so I just stayed on the same dosage. It wasn't easy but each week when I had reduced the dose my confidence grew and I thought 'I can do this'...............It was strange though, in the last weeks when I was down to just 100mg I stayed on this for three weeks as I didn't want to let the tablets go. I have now been off them for nine months and I'm doing fine.
What I will say though Cath is this. Don't do this until you feel ready yourself. Don't put pressure on yourself to come off the meds. When the time is right you will know yourself. Neurontin actually worked really well for me and I really needed it in the beginning to calm me down and help me deal with what was happening to me, (just my personal experience, I know others have had a different experience). I don't regret taking it but do agree that it was very difficult to come off.
Good luck, you will get there in your own time |
| filipe |
Posted - 09/22/2013 : 06:42:10
Chronic pain and emotional stress weakens the Imune system. One should avoid all that weakens the imune system, such as Electromagnetic radiation, neurotoxisn, stress, etc... |
| Cath |
Posted - 09/21/2013 : 12:00:52
Thanks NA - this is really useful, and actually makes sense, given my symptoms. Guess I'll just have to grin and bear it for a while. But at least now I know this isn't permanent.
When I visited my Doc this week he had no hesitation in telling me to up my dose again, and actually told me that my symptoms weren't irreversible. When I questioned him about the side effects, he simply said, "all drugs have some side effects".
And thanks Birdie too. It's always good to hear from someone who has gone through the same experience and come out of it fairly unscathed. This really does feel like a very over-stimulated nervous system. I have also been trying guided meditations, and they do help a little. |
| Birdie78 |
Posted - 09/21/2013 : 07:43:52
Cath, about 1,5 years ago I was in the same boat! I was on Lyrica (very similar to Neurontin) for about 2,5 years and decided to withdraw from it. Started in february with a dose of 225 mg and went down to 0 mg at the end of august.
First I have to say that I don't want to frighten anybody on this forum and I also know peoplo who withdrew from this kind of medication without major or any problems (even if they had a much more higher dose than I had).
I'd really suggest to came off this stuff very, very slowly. I reduced it in very small steps (about 10-15 mg every two weeks) and even that was too fast for me.
It really worsened my condition for a certain time (especially the pain), but: it's really not irreversible! Now, one year later, I am nearly back to normal (normal in my case means still in pain, but not in sooo much pain).
I even know a women who took about 600 mg Lyrica (also a very sensitive and pain-prone person) and she withdrew without any problems.
So, there can but there must not be problems. If you want to be on the safe side I especially would recommend to reduce the last third of the medication very slowly so that your body/brain has enough time to produce the neurotransmitters on his own again (the active component in Neurontin is GABApentin, GABA is an important transmitter of the inhibitory system for pain, anxiety and other conditions...).
I don't know if there're any pills to alleviate possible withdrawal-symptoms (IF you will suffer from them), maybe someone who is familiar with this (Next Adventure!?) would tell you more.
I my case I found guided relaxations and daily meditations very helpful to soothe my overstimulated nervous system. And what is very imoprtant: as soon as you notice some thoughts like "oh no, will this be permanent....", STOP this thought! This kind of thoughts, if you don't controll or change them, will definitely NOT be helpful. I also would recommend NOT to google about withdrawal symptoms. There're mainly those people in the forums with problems.
So when I could do it (and believe me: I am a very over-sensitive person...nearly collapsed and got severe muscle cramps a few days ago when I watched "Karate Kid", ha ha) you can do it, too!
Kind regards from Germany sends Birdie
PS oh sorry, just saw that NextAdventure still answered so there's some double informations...always takes me too much time to write something in English |
| NextAdventure |
Posted - 09/21/2013 : 07:21:19
Cath
No worries – I awoke this morning to 7 emails from this forum from people who are addicted – well actually they have neurological alterations from taking these drugs. It is not limited to the Lyrica and Neurontin class, benzodiazepines are far worse followed by antidepressants and other psyche drugs.
The easiest withdrawal is from the opiates. The fallacy of these gabaergic drugs is that they treat muscle pain, they are only approved for neuropathic pain with muscle pain being a distant byproduct. They are of limited use even in neuropathic pain.
Once you alter GABA in susceptible patients you can create over 150 use and withdrawal symptoms, many dozens of times worse than the original use. GABA is the major inhibitory neurotransmitter and once it is altered the whole nervous system puts the accelerator to the floor and runs wild.
The best way off these drugs is with water or milk titration over many months to sometimes a couple of years. This method is well posted on the net and there are forums just for discontinuing gabaergic drugs.
I am sorry you have been caught in this trap – you are far from being alone as the estimates are that 20% to 30% of the US population are taking CNS altering drugs by prescription. I have seen thousands of patients get off and have a wonderful life afterwards....and remember ALL pain medications eventually cause pain by receptor alterations. |
| Cath |
Posted - 09/21/2013 : 04:22:40
NA - I too would like to know how I come off this drug? I know that I'm addicted, and have been trying for nearly 2 years to come off it. I was advised to take it 4 years ago, by a professor of neurology, because in his opinion, it was better for me than the cocktail of painkillers and NSAIDs that I was already taking. He said it was more specific to the type of pain I experience, which is most definitely neurological - sharp and intense Allodynia and Paraesthia (hope I've spelt those correctly, I'm not an expert). I can deal with the milder muscle and joint aches but this sharp pain in my head, neck, and jaw, which by the end of the day radiates down my back and arms is debilitating. Not to mention the constant muscle cramps in my head and face. Should I take something else to deal with the withdrawal? Or is it just that lowering my dose is uncovering the actual pain that is always there, but masked by the Neurontin. I know that the only way to find out is to completely come off it, and stay off it for at least a year, but I can already feel myself becoming depressed again by this pain, and don't think I could hold out for that long.
Ok, sorry, I know I had a little rant there about my symptoms. I know we all on this forum have debilitating pain in one form or another. But when the pain is so intense, I can't concentrate on anything else but the symptoms. |
| tennis tom |
Posted - 09/20/2013 : 23:07:00
NA, So what do you recommend she take for her pain? |
| NextAdventure |
Posted - 09/20/2013 : 22:17:44
Tom
I have a clinical pharmacology certification and when in practice could prescribe. I also spent 12 years working in a clinic that specialized in getting non-addicts off prescribed drugs due to the changes they made in CNS. We also had the first web based support group started in 1998 and had over 6,000 people on the group at one time
This is not subjective information but hard scientific fact. This class of drugs has the potential to alter the CNS and elicit withdrawal symptoms – one major one being pain.
I ask you not to attempt to discredit me due to my own genetic response to chemicals. My caution is not based on my personal experience but on having worked with thousands of patients over 20+ years.
The information is gave may save someone years of suffering. |
| Cath |
Posted - 09/20/2013 : 10:50:47
Thanks Matthew for your advice, and TT for your comments.
At one of my recent Counselling sessions I had some therapy known as "the empty chair", which was very powerful, and at the time I did get in touch with some very strong and deeply repressed emotions. After the session, my Counsellor told me that I would probably get flashbacks to these emotions, and they might even disturb my dreams. But I walked out of that session, and the walls slammed back up. I did, however, have quite a mild pain day the day after. Then the pain came back with a vengeance the day after that.
|
| tennis tom |
Posted - 09/20/2013 : 09:27:15
quote:
Originally posted by NextAdventure
Cath
There can be intense withdrawal from Neurontin and the symptoms in part are worse pain. It has no bearing on how much pain you will have off the drug...but the withdrawal can take quite some time.
NA, as you've noted due to your heritage, you are particularly sensitive to medications. You should be careful not to administer a NOCEBO to others here possibly undermining there belief in medications that might be useful for short term relief of pain or anxiety. I've taken meds that have been useful to ME. Not everyone has the same hypersensitivity to meds as you. Not all meds are bad or dangerous, most are beneficial when prescribed by a competent doctor.
==================================================
TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale
Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605
==================================================
"It is no measure of health to be well adjusted to a profoundly sick society." Jiddu Krishnamurti
"Pain is inevitable; suffering is optional." Author Unknown
"Happy People Are Happy Putters." Frank Nobilo, Golf Analyst
"Be careful about reading health books. You may die of a misprint." Mark Twain and Balto
"The hot-dog is the noblest of dogs; it feeds the hand that bites it." Dr. Laurence Johnston Peter
"...the human emotional system was not designed to endure the mental rigors of a tennis match." Dr. Allen Fox
======================================================
"If it ends with "itis" or "algia" or "syndrome" and doctors can't figure out what causes it, then it might be TMS." Dave the Mod =================================================
TMS PRACTITIONERS:
John Sarno, MD
400 E 34th St, New York, NY 10016
(212) 263-6035
Dr. Sarno is now retired, if you call this number you will be referred to his associate Dr. Rashbaum.
"...there are so many things little and big that are tms, I wouldn't have time to write about all of them": Told to icelikeaninja by Dr. Sarno
Here's the TMS practitioners list from the TMS Help Forum:
http://www.tmshelp.com/links.htm
Here's a list of TMS practitioners from the TMS Wiki:
http://tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist
|
| MatthewNJ |
Posted - 09/20/2013 : 08:38:25
Cath, Dave nailed this on the head! When I read your posts, the thing I though of was Peter S. Levine "Waking the tiger, Healing the Trauma". His process of somatic experienceing has helped me a great deal in reaching my emotions. I, like you have a challenge feeling. Recently (Monday evening through Wednesday night) I had two days when I was sad and I was actually able to feel it. But also to stay with it and let it process through me. It has passed now. WHAT a difference from having severe pain. what an amazing thing to actually feel my emotions! The book comes with a CD and practice methods. Remember also that Dr. Sarno was not a psychologist and he left that part to this process to a trained group of psychologists. So although he said "think psychological" it was a very high level process. IMO It takes a good counselor that understands TMS to get you there. Dr. Sarno sent me to one and it changed my life.
Matthew
Ferretsx3@comcast.net
--------------------
Less activated, more regulated and more resilient. |
| NextAdventure |
Posted - 09/20/2013 : 06:54:09
Cath
There can be intense withdrawal from Neurontin and the symptoms in part are worse pain. It has no bearing on how much pain you will have off the drug...but the withdrawal can take quite some time. |
| Cath |
Posted - 09/20/2013 : 03:48:28
Thanks Dave, for reminding me that I am still a work in progress. My husband and I are currently having couples counselling, and I have been having counselling sessions on my own prior to this. I know I have the typical TMS "pool of rage", but I really have to dig deep in order to feel it. For me, it's painful, and on occasions almost impossible to get in touch with those feelings, and after almost 3 years of trying to "think psychological" about my pain without any decrease in the intensity, I do tend to slip back into looking for physical answers. I have these feelings well and truly locked away, so in TMS terms, you could say that the pain is doing a great job.
I have been trying all Summer to come off my Neurontin, and managed to come down on my dosage for the past 4 months, but the pain has been so intense lately, I went back to my doc this week, and he's told me to up the dosage again. I am loathe to give up the small amount of ground I've gained, but I really need the relief for a while. |
| Dave |
Posted - 09/19/2013 : 17:01:34
quote:
Originally posted by Cath
I am at a stage in my life where everything seems to be hunky dory, and I am feeling really happy, apart from the chronic pain. I guess the only bad feelings I have now are frustration about not being able to heal myself.
TMS is not about how you feel on the outside. It is about how the child inside you feels about the pressure you put on yourself to be the way that you are. In fact the very things that make you happy (such as family) can also contribute to the inner rage, even though we don't want to admit it.
Often it is the times when we feel "everything is OK" that the symptoms persist, because whatever is causing them is not being felt.
It is circular reasoning to say that frustration about the pain is the cause of the pain. If you are still focused on the symptoms, they are serving some purpose. I think it is safe to say that no matter how happy one might feel on the outside, there is always some buried reason for psychogenic symptoms. Part of recovery is trying to find out what it might be. |
| Peregrinus |
Posted - 09/19/2013 : 10:42:23
quote:
Originally posted by shawnsmith
Fibromyalgia Breakthrough; Treat the Cause & Not Only Symptoms
Your post should have read "Fibromyalgia SCAM; Waste money & Keep the Symptoms".
You don't have to be a high school graduate to observe that the referenced web site message is a series of unsubstantiated claims and promises. There are no references to supporting research. Where does the claim that 80% of fibro sufferers have infections come from? What percentage of the public has infections at any given time? If FM is caused by Lyme Disease then why isn't there a geographical correlation between LD and FM?
If I have learned one thing from this forum it is that the medical community is for the most part self serving, corrupt, and predatory. |
| JaxCat |
Posted - 09/19/2013 : 08:58:08
Humm... I'm suspicious. Check this on sitejabber and the BBB. |
| Cath |
Posted - 09/19/2013 : 05:09:37
Shawnsmith - this is interesting. My Fibro was triggered by the death of a loved one, and also coincided with a bout of flu and then a really bad chest infection. I also had another mystery infection about 8 months after the chest infection, and just after some minor surgery. I have never felt so ill, and been in so much pain at the time of the second infection. I literally thought I was going to die. After that the Fibro really took hold, and I've never been the same since.
I am going through some major doubts at the moment about the whole Sarno thing for my pain, and I know that I'm still looking for a physical cause. I thought I had it all worked out, and that I had convinced myself my pain was psychosomatic, but I know now that my stumbling block is acceptance.
I am at a stage in my life where everything seems to be hunky dory, and I am feeling really happy, apart from the chronic pain. I guess the only bad feelings I have now are frustration about not being able to heal myself. Maybe that's enough to keep the pain alive. Who knows? I think I'm just really confused.
|
|
|
