Pain Meds-ketamine

Discussion in 'Fibromyalgia Main Forum' started by srh, Apr 13, 2006.

  1. srh

    srh New Member

    I just returned from an appt with a pain specialist. I was hoping for such good news.
    He gave me some ideas. Physical therapy, being around people, gave me new AD and something new cleopran or something like that. Says it is from Europe and only one Pharmacy around here has which is miles away, so they have to mail it.
    Anyway, he said there is no pain medicine that works on FM. Nothing. Talked alot about depression. Which yes I am from the pain, but not anything else, that I know of anyway.
    Has anyone else been told that about pain meds? was just wondering if there is something that works on our pain a little anyway. I have taken darvocet for quite awhile, but it does nothing.
    thanks

    [This Message was Edited on 04/13/2006]
  2. taniazcatz

    taniazcatz New Member

    He sounds like some other doctors I know who really dont want to prescribe pain meds. I've had FMS/Lupus for 6 years now. I have taken everything from motrin all the way up to duragesic and I can tell you, some of the meds have worked and some haven't. The ones that have worked for me are narcotics. I'm on oxycontin 20 mg 3 times a day and that works for me. I think that doctor either doesn't know what the heck he's talking about and/or he doesn't want to give you anything that maybe a narctic that would help your pain. I'd get another opinion from from another doctor. As far as pain meds go, darvocet is a pretty mild drug. Ultram is a drug that some people have good luck with. It works like a narcotic but it isn't a narcotic. Don't get discouraged by this doctor. You have pain, it's very real and there are absolutely medicines in this country that are very effective. YOu just have to first find a doctor that is willing to try you on several meds until you find one that works for you. Don't give up. Hang in there. And don't let these doctor's make you feel like this is hopeless or even try to convince you that your pain isn't real. This is a big problem a lot of with FMS have to struggle with. I wish the best for you.

    Tanya
  3. srh

    srh New Member

    Thank you - I have tried Ultram before and it never worked. Have also tried Codeine with Tylenol.
    Thanks for telling me something is going to work i thought maybe he was right.
    Am going to start my gold shots again so hopefully that will help too and i can have a heart to heart with my PCP then.
    thanks again
  4. Suzanne4health

    Suzanne4health New Member

    Hello!

    Well... I have tried Ultram, Motrin 800 and Bextra. The only thing that has consistently worked for me is Vicodin 500, 3 times a day.

    I still have pain, but it is not like it used to be. It allows me to move forward with my daily life. I have tried other natural remedies, but they do NOT work for me. I am also on Cymbalta for depression and pain. The mix seems to work well.

    Vitamin B6 injections also have helped with my energy and being on a low carb diet. The low carb diet that I am allows me to have veggies, salad, and cereal in the morning with protein snacks in between. Very flexible.

    Hopes this helps! Pain meds to work for Fibro patients, at least for me!
  5. taniazcatz

    taniazcatz New Member

    srh,

    You're welcome. I really hope the gold shots are effective. They helped me, I took gold when I was first diagnosed with lupus. Keep us updated on how you are doing, okay?

    Tanya
  6. srh

    srh New Member

    Thanks everyone.

    Have you ever heard of ketamine. I really messed the spelling up above totally. It was originally a date rape drug. that's what he gave me a script for.

    Scary!! I called the pharmacy and told them to put a hold on it. I think I'd rather try something else!!
  7. babycakes01

    babycakes01 New Member

    Ketamine was originally used as a tranquilizer for animals then it became a popular drug to abuse.
  8. rosemarie

    rosemarie Member

    I wish that your doctor and so many others could experenice this pain from fibromyaligia. so that they could get the full feeling of this PAIN,we go through each day.Maybe it would assist them in providing patients with fibro with pain medicatations.

    But alas there are some doctors pain specialists and others who are running scared. They feel that if they prescribe narcotics to patients with fibro that the FEDS will get them and sue them for over prescribing narcotics. I am not kidding this is a HUGE problem for doctors. Most want to help but fear that their medical license will be put on the line . This has happened to many doctors and mine is going th rough it right now.

    When doctors like my pain specialist see many patients and are prescribing many narcotic pain meds there is always one or two patients that don't do as they are told or don't fit with in the relm of needing pain meds. BEing refused pain meds is very upsetting and in my doctors case 1 of the 1 women came in and was told that she needed to get some mental help first. And this upset her. Now she and one other person have filed charges against my doctor and it is really scarey for us as patients.

    But from what you said this doctor does not belive in treating fibro as a condition that causes real intense pain for the person who has it and he is unwilling to treat this pain. The best I can tell you is to find another doctor to see if you can get meds.But be sure to read all the papers that you may be requried to sign and agree with.

    When you find a good pain doctor you will have to fill out an agreement as to how often you must see him and how often you can get your pain meds and you have to sign this paper. IF not no treatment. This is for the benifit of the doctor.
    Keep looking for a good pain doctor and ask for an appointment to just talk to him about his policy's and what he believes in for treatment for your conditition. What meds is he willing to try to help you get some relief of your pain. IF he is unwilling to prescribe what you need then he is not the kind of doctor that you need.

    Look at it as taking a car for a test drive. you need to see that it works and that there are no hidden problems that could cost you in the end. I did this with my OBGYN and my peditritions for my kids when they were young. ASk people you know who have the same thing you have who they like and if he is good and is willing to help. IT is the best way to find a good doctor.

    GOod luck and best wishes for you.
    {{{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}
    Rosemarie
  9. msurina1

    msurina1 New Member

    Never a reason to suffer anytime or anywhere.
    Find a real pain manager specialist. HURRY!
  10. daylilyfan

    daylilyfan New Member

    I have another problem now, in addition to fibro, called RSD. When you have this, they don't want you on pain meds, because it is usually a life long problem, and it can spread, and people can find themselves on so much pain medication so quickly. It is a problem with the sympathetic nerves. I cannot describe how incredibly painful it is. I have read all I can about pain and pain control in the last 8 months since getting RSD, and I do understand why docs don't want people to start on narcotics if it can be avoided. Especially with RSD where the pain levels are so unbelieveably high. They have to prescribe such high amounts of narcotic, and often combinations of them to be effective.

    I would do about anything to have that script for Ketamine! My pain doc does not know of any way of getting Ketamine other than a small amount in topical cream.

    Ketamine is going to be the wonder drug for RSD. I went to a specialist at the Cleveland Clinic a couple weeks ago. Very highly respected. Super nice lady. She said there will be an oral formulation with ketamine in it they are hoping will be available in about 2 years. People on my RSD Message Board who are from England and Australian who are on a liquid form of Ketamine say that it is a miracle. Amazing pain relief.

    Right now, I am waiting for the UPS truck to come and bring me some prescription compounded cream that has Ketamine in it to put on my skin where the worst part of my pain is. Supposed to work better than taking morphine by mouth. They said just a light application of this cream. I have not tried it, and I can barely wait, this pain is so bad, and getting relief will be like Chistmas to an 8 year old. It will also have elavil, neurontin, lidocaine, and a few other meds in it. I cannot take elavil or neurontin ... but they say it will be ok topically. It will absorb directly into the skin in the painful area. BUT - Ketamine is the key ingredient in the cream for the pain relief.

    It may be "the date rape drug" ... and it is used in veterenary medicine. But, it is also a fantastic anesthetic and pain reliever. If your doctor was able to find a place that had ketamine, I would give it a try if I were you.

    Also - talk to your doc about trying Topamax. Many people use neurontin, but it comes with a slew of side effects including edema and severe weight gain. Topamax can make you dizzy and nauseated while you get used to it, but it helped me dramatically with my muscle pain (this was pre-RSD)... It is not a "pain med" ... but it works to reduce pain quite well in some people. A nice side effect is that it works well to keep away all headaches!

    Jules

    [This Message was Edited on 04/13/2006]
  11. srh

    srh New Member

    I could use the help with the headaches.
    I decided to have them mail it out. It wasn't very expensive at all and I did a search on it.

    It apparently has done a lot of good in England where they first tested it.
    I can't believe we can get it in Central Nebraska in a pill form and you can't in Cleveland. That is totally amazing to me. We are in the sticks you know!!!!
    I will let you know how it works. I hope it's not real bad stuff.
    I've always thought i would try anything i could. Guess this is my chance.
  12. srh

    srh New Member

  13. srh

    srh New Member

    What is RSD? I'm not too up on all the abrev.
  14. daylilyfan

    daylilyfan New Member

    RSD stands for Reflex Sympathetic Dystrophy. Years ago, it was called Causalgia. It is really now known as CRPS - Complex Regional Pain Syndrome, which encompases RSD and a few other related problems.

    RSD has nothing to do with Fibro. There are a few people here on this board that are unfortunate enough to have it though.

    Please remember when reading the info below that just because you have Fibro does NOT mean you have any greater chance of getting RSD than anyone else does. It does not strike any race more than any other. It does happen in women more than men, but that is it. It happens to children, middle age and elderly, but more in middle age.

    It is a nerve - I guess you could say "problem" that happens after an injury. It could be something so minor as a twisted shoulder, as in my case, or as major as a lightening strike or gunshot wound. Sometimes it happens after surgery. It can run in families, but most of the time, it does not. My half sister had it, and I probably had a minor case of it 5 years ago when I fractured my foot.

    Simply put, your sympathetic nerve gets stuck in the "on" position. When you get an injury, your nerve sends a pain signal to your brain that says "HEY - INJURY HERE!!!! PAIN!!! " Well, for me, that signal never stopped. It goes 24/7.

    There is something called the McGill pain scale where there are different illnesses listed by pain, and they are given numeric ratings for the pain they cause. Bone fractures are at 18. Cancer at 23. Chronic back pain 25. Prepared childbirth 33. Amputation of digit 37. RSD is 45. There is nothing on the scale past RSD.

    It has symptoms of extreme pain, feelings of electrical shocks, horrid muscle spasms, severe swelling, wild body temperature fluxuations.. all sorts of things. It's the strangest thing to have.

    One site has this to say... "There are several progressive stages to RSD
    and it can spread to any and all parts of the body. Initially, symptoms may include swelling and sweating, along with temperature and color
    changes in the affected extremity. Severe atrophy, disfiguring muscle contractions and osteoporosis may later occur.

    Severe, burning pain is the most common symptom. Sufferers describe the pain as if “doused with gasoline and lit on fire.” Even simple sensations such as a gentle breeze or vibration can send one into spasms of unrelenting pain."

    If caught early - which is not usually the case, because so few doctors know about it - it can often be put into remission. Thankfully, I knew about it, and I started treatment for mine within a few weeks of the symptoms starting. I **should** see remission in the next couple years if I continue fighting the pain and exercising it, using it normally even though it hurts worse than anything I have ever felt.

    It just amazes me that I have the most painful non-terminal disease a person can have,yet they do not like to give pain meds for it. Some docs will. But a growing number will not. Science is showing more and more that taking narcotics does things to our natural brain chemistry that actually increases our pain over time. Don't ask me to explain that - but believe me, I have done one heck of a lot of reading about pain control in the last few months, and have opted to stay with my pain doc who does not believe in pain meds for RSD. We are using anti-seziure med (topamax), lidoderm patches, two muscle relaxers (flexeril and baclofen), epsom salt soaks, anti-depressant (the only one I can take is Wellbutrin which is not the best for pain) and now I am going to switch my blood pressure med for one called catapress which is supposed to work on nerve pain. And that ketamine cream. When it is really bad, I get rows of shots of depo-medrol, ketamine and lidocain injections. Last time it was over 40 shots at once. Something like trigger point injections. Botox is another thing I may try down the road, but it is pretty expensive.

    I am VERY lucky that mine was caught early. I have been very slowly improving since I got RSD back in Sept. 05. December was when I was the worst. Most people go through 8-10 docs before they find what is wrong, and it takes 5 years or more. Mine was 1 doc, and 3 weeks after my original injury. But then, I knew what to look for and who to go to since they thought I had it in 2001.

    I am in a little town a few hours from Cleveland. I went to the Clev. Clinic because there is a world known RSD researcher there. The lady I saw works with him. I wanted to know if there was anything else I could do. Maybe they can get the Ketamine up there. But, I am lucky if they can get Tylenol where I live! LOL! But, my local pain doc is really good - and he is up on many things. He has an interest in RSD, and so he has been treating me well, according to the Clev. Clinic doc.

    I would not wish RSD on any person on this Earth. And, mine is only in my shoulder, upper arm, neck and part of my face. There are SO MANY people who have it in their entire body. At least with it located where it is on my body, I can still walk, drive, and work. I thank God for that every single day.
  15. srh

    srh New Member

    I am so sorry for your pain. I had never heard of it. You were so lucky to find a doctor that did and so quick.
    So you live in the sticks per say also?? Just Kidding.
    I so hope you go into remission soon. My prayers are with you.
    This sight is so wonderful. It has done wonders for me. Just being able to read and talk to others that have the same thing you do and understand, not think you are crazy. Best of luck to you.
    Thank you for all your information.
  16. daylilyfan

    daylilyfan New Member

    Don't be sorry.... :)

    It's just something that happens. It just happened to me instead of someone else.

    I explained so much about it because there are others who will read about it here. Maybe they know someone with similar symptoms who have not been diagnosed and reading this here will help them get the diagnosis they need.

    Like fibro, any education we can get out about RSD does people good that have it. Unlike fibro, there are some physical signs of our pain. My hand swells, and turns many shades of red/purple through out the day. People see that and think "oh, that must hurt".... when my hand does not hurt at all... it just shows up there. People with fibro hurt all over, and have no outward signs, so people cannot understand their pain.

    I'd be very interested when you get your medication what exactly it is called, and how it is taken and if it helps.

    Thanks.... hope you feel better!

    Jules
  17. srh

    srh New Member

    I called the Pharmacy yesterday/ Ketamine is right. It is in pill form and he is giving me 50 mg to start usually it is 100 mg.
    You are up early.
    [This Message was Edited on 04/14/2006]
  18. srh

    srh New Member

    Well the Ketamine never worked. I took it for 2 nights and it kept me awake all night. I know i should have tried it longer, but I had to work on Monday and I needed some sleep.
    My other meds now work good for that part.

    I got a gold shot yesterday. I swear I feel better this morning. My muscles still hurt & Ache, but I don't have as much bone pain. Hopefully!!!!!!!!!!

    Hope everyone is at least passable. This gets so old for all of us. I feel for each & everyone one of you b/c I know.

    Thanks. Hugs to all.
  19. jakeg

    jakeg New Member

    Here are the 2 meds that I take in combination. Sometimes it work sometimes it doesn't.

    Oxycontin 10mg twice a day and vicodin 5/500 as needed.

    This combo seems to work most of the time like I said. My doc also told me with this combo you need to be careful of not overdoing becuase you will end up paining in the long run.

    I don't think we will ever be pain free but any amount of relief is a god send.

    Jake
  20. srh

    srh New Member

    You have that right. It just gets old. And then Dr.s blame depression. I'd like to see them be in pain like we are each and every day and hour.

    You must have an ok dr. I'm not sure mine would give me the pain meds you have. But if I don't start feeling better with the gold and Cymbalta, I'm going to ask.

    I told him yesterday I didn't even know why I take the Davrocet, b/c it doesn't work. He thinks it does a little, just not enough. He might be right.

    I was going to ask for something yesterday, but I want to see on the gold first.

    Have a good day. Thanks. T/C