MS person needs some help on pain

[ginlove36]

I was told that I had MS in 2004. At first my whole left side was numb, what bothers me is every time I look at anyones problems they have with MS, the symptoms are not even close to what I am going through. When I got feeling back in my left side I now have severe cronic pain in my left side that never and I stress never goes away. I hear people say pins and needles, I dont have that, this pain and the only way I can discribe it, is like if i stuck my left side in a snow bank and left it there. That is the only way I can discribe it. I take Neurotin 900mg 3 times a day with Tramadol 100 mg three times a day also, and even that high dose of pain med I still am not getting any relief. Ok Im jumping off subject for just a sec, I had four wisdom teeth tooken out and they gave me Oxycodone, and low and behold my pain lessens dramatically with my MS.. But I asked the doctors if there was anything else that they could try for me, and the answer NO..My ? is.....If I am going to be scared with this MS for the rest of my life and I am in severe dramatic pain, why wouldnt they just give me what I need to get my life back???? Ok I understand the whole addiction thing, but at this point it really doesnt matter, I am going to hurt for the rest of my life anyways, and they dont live in our pain. And finally u know what is really funny, I thought I was going to get some help from a pain clinic, I walked in and you know what happened??? They told me they couldnt help me, Please tell me of someone that might care...

[ginlove36]

I guess I made the wrong question...What I want to know is there any help for my pain, basically I struggle everyday with it, im tired of hearing there is no more help for me...Please Please tell me something...ginny

[patsy10]

Have the doctors tried you on lyrica or cymbalta.  Both are supposed to help with neuropathic pain?  I have this horrible pain that you describe on the whole left side of my body.  I don't have an MS diagnosis though as all my testing has come back normal.  How did they diagnose MS?   Do you have brain lesions?

[Rachele7]

I read your post and felt compelled to reply. It's terrible that nobody is helping you with your pain. How long have you been suffering? Don't give up hope and think you have no choice but to live in severe pain without any help to lessen it. It's true that many non-opiate medications such as Lyrica, neurontin, and other medications can help with certain types of pain inc. neuropathy, but, these aren't always effective or enough (and some can't take) and when severe pain isn't improving, then pain medications like opiates are necessary to try and some recent studies are showing that with some severe pain, the higher doses of some opiates can be of help. Fentanyl patches are one of these that are used for such with success. With the patches the medication is absorbed through the skin and into the body and therefore doesn't give some of the common adverse effects as the ones taken orally that can irritate the stomach, etc. and although can still cause constipation, seems to be less so. There are also fast acting Fentanyl meds for breakthrough pain even though on a slowly-released patch for those that need. Note--there is one type, that can be very hard on your teeth due to the sugar it contains so if ever do use, please talk to your doctor first about, as there is one that is sugarless. Often people don't associate MS with pain but this is a mistake as there are sufferers of MS who have chronic pain as well as with their other symptoms. It is terrible that the pain clinic has not helped you with pain control. There are many doctors who are trying to educate others in the medical field about fear of addiction of opiates and for those with severe chronic pain, which today, all pain clinics should be helping to educate and not part of the problem. It has been found in enough studies that it is not common for those in severe chronic pain to experience true addiction with the proper amount of opiate meds but can experience what is called tolerance, as is a normal occurrence to many drugs. This is not the same as addiction. Another big difference the studies have found is that those who are in severe chronic pain and using opiates for pain control do not experience the "high" or other effects that are associated with those who do not need this strong of pain medication or for those who seek the drug for "recreational" purposes, etc. (Although there are some people who already have addictions or prone to addiction that may need to be watched more carefully but still should not be excluded in the chance for real pain relief with opiates if their condition warrants.) More proof of this has been shown in studies with the findings that when one's condition is corrected or improved, for those who are unfortunate to live in severe pain, they are able to stop or lessen the meds without the associated addictive withdrawal symptoms. Because tolerance is a very real effect of most drugs including opiates, one can't dismiss the problems with this however, as it is a problem because this causes one to have to increase the amount of the drug to get the same results. It's a normal reaction that happens in the body with many things that the Creator made in us for a reason, I'm sure, but not a welcoming effect from those on medications that results in needing to go on higher and higher amounts of the drug. Don't let this scare you however from considering taking an opiate or other meds for your severe chronic pain if necessary for relief, as pain without relief over time can have much more concerns than tolerance. Also, not everyone, especially if their condition is not progressing, needs to go on higher amounts due to tolerance, and even if so, tolerance can take place over many years, and also, I've read that there are things that can be done for this including changing the pain medication to another for a time and then going back, but you would need to discuss all this with your doctor. Please don't go just by what these doctors have told you saying there's nothing more they can do for you, as nobody should live in chronic pain without everything being tried to stop or lessen ones pain. It's possible that a combination of the neurontin and an opiate like Fentanyl could be helpful. If your doctors won't attempt to do anything more for you then you absolutely need to find another. BTW, the pain you describe could still be a neuropathy even though you don't describe the "pins & needles" sensation. Neuropathy symptoms comes in different forms and a common one of "burning" can also be experienced and described differently from one person to the next, however when you describe yours as if in a snow bank it tells me your experiencing what many experience as the "frostbit-feeling" type of burning but without the often associated "tingling" with it or as others call "pins & needles". In fact, if a type of neuropathy you're experiencing, over time, it could change to include experiencing additional sensations or could stay the same. It's also possible, depending if it is a type of neuropathy or what it is, and depending on the cause, that it may lessen over time or leave completely. Unfortunately some neuropathies can progress and worsen over time, depending on the cause and why one should never listen to those who tell you, "it doesn't matter why you have it, just so the symptoms are being treated". Of course it matters what is causing ones symptoms, because if one can get to the bottom of the cause then it could mean curing and therefore stopping the pain, or at least controlling the underlying problem and the pain or even lessening of the pain. For example, with diabetes, one can control through proper meds, diet, etc. and could stop the neuropathy. Or a medication can cause neuropathy and stopping of can stop the neuropathy. It's important to never assume that all of your symptoms are coming from your disease and is important to discuss with your doctors the possibility that a particular symptom maybe from something else going on. MS that has so many possible and different symptoms through out the entire body. Has anyone asked you about shingles? It is also nerve related and I believe can follow an illness or injury. I don't know much about shingles but I think it's something you should also inquire with the doctors about. No matter what, you need to get more answers on your illness and pain which may be related or two different things. Have you gotten a 2nd opinion on your MS diagnosis? How did they diagnose it? I really think from what you wrote in your post that you still need a lot of questions answered. I hope in some way I have helped and at least have given some ideas for questions that you can be asking your doctors. But most of all I hope that you realize that you do not have to live the rest of your life in severe chronic pain and if your doctors will not help you with this then it's time to seek another doctor. There's many out there who take chronic pain very seriously and won't let you continue without relief. This country needs to be more educated in severe, chronic pain with the medical field as well as the public in general. You're not alone, there are so many who do understand and you don't have to suffer silently and without real pain relief. Pain that doesn't go away and is disruptive to ones life is a very serious disease in itself and too many people have had to endure inadequate help for as well as unfair prejudices because of and therefore not being cared for properly and treated poorly because of and all due to misconceptions and wrong information. If everyone experienced severe chronic pain, even pain that is normally not considered the most severe but becomes intolerable due to it never going away, we wouldn't have stories such as yours and the many others nor would we have the prejudices that exist today. Speak out- Awareness equals further education and real hope for needed change.

[ginlove36]

Wow TY....In 2004 I was sitting at the table having coffee, when my face went numb then within matters of minutes my whole left side went numb, my boyfriend at the time, took me to the doctors where they did a cat scan, I had one lesion on my frontal right side of my brain, they admitted me into the hospital, and a couple days went by, the neurologist told me to call the family and get them up there, sat everyone down and told me i had a brain tumor and I had about six months to live, that whole night they had me so drugged up on meds, but I remember my family crying all night long, the very next morning the doctor come back in said they had made a mistake that it wasnt a tumor, because in the middle of the night they did another scan and I had developed another lesion, so they started to think I was having strokes, so they started testing me more, they ruled that out and sent me home with no answer, about a week later I started getting worse with blurred vision, doubled vision, and unstability, I was falling alot,so I went back to the emergency room and they transferred me to a bigger hospital, where I would spend a month, doing test after test, they did MRIs, blood work, Im not sure what the one test was called but they connected me to something like electic waves or something on my left side, I did vision test where I had to look at a tv with something on my head like an EKG, only on my head and left side, I was pretty messed up and its hard for me to remember everything they did, but the last test they did gave them the answer that I awaited for a month for it was a spinal tap, which showed them something that proved I definitely had MS, and yes actually all of my test were also sent to The Mayo Health Clinic...In Rodchester, Minnesota Where they also confirmed it for me.

But thank you so much for caring and posting that for me, It was a major help, and I am starting to believe that I really do need to do something and find another doctor that is going to help me. You know it gets a little depressing when you cant even cope, since 2004 I have never had a moment where I didnt hurt, I just wish I could go back to the day before this happened and feel the no pain, I just wish I could, God how I pray someday it will go away, but they said it never will cause their is so much damage, I hate it...I love you for caring and making me even think for a moment that maybe I can get some help someday for this. I have four kids, and I think they hate me because I am grouchy cause of the pain, and its so hard to maintain, cause the pain is so exhausting, and I get so exhausted taking care of the kids sometimes, sometimes I just want to lay down and never get back up, but I keep fighting and fighting....I cant say enough how much it ment for you guys to post your comments....Thank you again.....luv ginny