17th May 2005
Hey Mary Kay,
Welcome to the FM board. We are a nice bunch of folks here, all ages, from all walks of life, as FM knows no boundries.
I am also on Duragesic/Fentynal 50mcg every 48 hours. I need breakthrough meds for when my pain spikes between patch changes. If you notice that your pain is spiking between changes that is the only other thing I would suggest you speak to your doc about. Most people on LA (long acting) meds need a short acting breakthrough med to help them through their pain spikes. You have been put on one of the best pain meds, IMO. It isn't for everyone, but most get good relief from it. I was very lucky to be referred to a Pain Management doc when I found out I had multiple lower lumbar herniated disks in Oct '02. I was dx'd with FM in March of '02. So my PM doc treats me for my back pain but mostly for my FM pain. I am getting a new MRI on my lower back as my injury has worsened and I may have some permenant nerve damage from letting it get this far. I will possibly need surgery, but my PM doc has already agreed to treat me for FM if the surgery is sucessful. Though I doubt it will be a total sucess. I am also being tested for MS since I recently have had a positive Epstein Barr Virus test. My Rheumy also suspects Chronic Immune Dysfuntion (Disorder? I can't ever remember what the "D" is for!) Syndrome.
Your meds sound good. I was like you. Tried them ALL! You get sick of it don't you? I see you are using a CNS med (Neurontin) and a muscle relaxent, something for sleep, and oh, NOW I see you are already on a b/t med. So it looks like you are covered. You know what the Wellbutrin is for don't you? Not just for the depression. Wellbutrin is considered an Selective Serotonin Reuptake Inhibitor, and is one of the most commonly prescribed medications for Fibro. It acts as a serotonin booster to increase energy and it is believed to also help with pain once the serotonin is increase which in turn, increases your endorphines (your body's natural pain killer). There are many of these SSRI classification meds on the market. I am on Lexapro for depression and anxiety. I refused all the other anti-D's prescribed for FM. I tried them, and didn't like them. Only when I was dx'd with major depression and GAD did I accept the Lexapro. There are a lot of threads recently posted here that discuss the different anti-D's like Cymbalta, Effexor, and Lexapro. You may want to take a peek and page back to find them. Just for an FYI.
As far as your husband...well I think when a spouse has FM or any other condition that limits mobility and stamina, it is sometimes harder on the other spouse who is healthy than the spouse who is sick. Reason being is that they don't understand and really never can, so it is frustrating for them. They are frustrated cuz they see you are in pain, they can't help you feel better, and sometimes they don't understand the reason you just "can't" any more. Simple tasks become MAJOR tasks. Going out to dinner, or doing social activities with friends and family sometimes are too much for the sick spouse and the healthy spouse doesn't understand, and sometimes they get mad at the spouse who is sick. There are many times when I don't go with my husband to functions from his job, like cookouts and such, or even to go see friends. He has gotten used to it, but I know it is frustrating for him because we used to have a very active social life. It takes time for your spouse to actually witness your pain. Whatever you do, DO NOT OVER DO IT for the sake of not upsetting your husband. You will regret it. One day of over doing it will bring on several days of suffering.
My advice is to find as much info about FM as you can, give it to your husband to read. Take him with you to a couple of your doctor's appts so he can witness what the doctor says to you. Maybe then the doc will take time out to explain FM to your husband. Let your husband ask questions of the doc. Let you husband read the posts on these boards. Ask him to remember when he had the flu or a cold so bad it made him achey and lay in bed, tell him that is how you feel a lot of the time. I couldn't do that with my husband, cuz, believe this! He has never been really sick or had the flu! So it was hard for him to understand the feeling! He recently suffered a case of "walking pneumonia" so now he understands a little better about fatigue and having no energy. If there is a FM support group near you, try and go to some meetings, take your husband with you. If he resists, tell him how important it is to you and that you would go with him if he were ill. Or what if you had cancer instead? He would support you then too? Same difference. You need for him to get involved in your FM and get to the "core" of your illness for him to understand. He will never fully understand cuz he will never be able to "feel" your pain. It's hard for others to understand pain they can't "see". And I know that a lot of times us Fibromights feel like we are in highschool trying to get out of gym class because we "claim" we have cramps! I think I had my period all month long when I was in highschool! LOL But that's how we feel sometimes. Like we are trying to convince our teacher that we can't participate in gym class and we get that look from the teacher like "s-u-r-e". ;)
You can find FM support groups in you area usually from the local hospitals. Call them on the phone and see if they have FM support group meetings. Or ask one of your doctors if they know of any support groups for FM. Call physical therapists and ask if they know of any FM support groups in the area. There is one at one of my local hospitals here and there is one in a nearby town also. The one in the nearby town puts an add in one of the local "community" news papers. I know what you mean about driving to see your doc no matter how far! My PM doc is nearly a 50 mile drive for me. I have told him before that I'm thankful he is so much younger than me, so I know he will out live me!
So, take it easy unpacking. Do it slow, don't worry about the mess. I know you will! :) Unpack a room at a time. Like one room a day. You have children? Let them help if they are old enough, even if they are little they can unpack their own toys and such. Let your husband do the heavy stuff. Just do one room at a time, unpack that room, get it semi-organized, like setting up your TV or your computer, then move to the next room. I personally think the kitchen is the worst room to unpack and put together! You have to put it together right the first time so it's functional for you, then you can't remember where you put things for at least 2 months! LOL Watch the packers to make sure they pack in an organized way so that when you unpack it goes smoothly. Like make sure they keep all one room in a certain set of boxes that are labeled Living Room or Bedroom. I know after awhile you get tired and just start throwing things in boxes, then when you go to unpack you find your kitchen silverware in a box with your undie pants. :)
Your meds sound great. I gotta tell you that sometimes it takes awhile to get to the right dose of Duragesic. What is your dosage level? Are you experiencing any nausea from the Duragesic? My PM doc prescribed an anti-nausea med with my first couple scripts of the Duragesic. Oh and there is now a generic brand of Fentynal. Two actually. One is called MYLON and it totally sucks. Go to the Pain Management board and look for threads that discuss the "Patch". MYLON for some reason put out a product that is so inferior to the name brand, doctors are looking to get it pulled from the market. It is wafer thin and you can barely see the medication gel in the patch. The other generic is SANDOZ. Sandoz is the better of the two, however it doesn't stick worth a hoot. It usually comes loose only a few hours after you apply it. It isn't uncommon for the patch to come loose, but the Sandoz comes loose more easily, which ends up causing the gel to dry out. It also doesn't have as much medication in it as the Duragesic brand. When a company is allowed to manufacter a generic brand, the FDA regulates the amount of the primary medication it must contain. And it usually isn't as much as the brand name. It isn't usually a big difference, not enough to notice anyway. Like Percocet is Oxycodone and comes in different doses. Like 10mg, well the generic brand Endocet only has to have maybe 97% of Oxycondone in it, where the brand name has 100%. Understand? But for some reason, when the Duragesic patented was allowed to expire and generic brands could be made, they seem to have more problems than most generic meds out there. I have my doctor write my Duragesic script to "fill brand name only". It only costs maybe $20 but it's worth it.
Keep us posted and welcome to your new family of the Mighty Fibros! :) Post any time you feel you need a little extra support, a shoulder to cry on, to share a happy day with us, or reply to any post where you think you could help someone else. I hope that we hear a lot more from you.
Here's wishing you a good spirit,
tk
Welcome to the FM board. We are a nice bunch of folks here, all ages, from all walks of life, as FM knows no boundries.
I am also on Duragesic/Fentynal 50mcg every 48 hours. I need breakthrough meds for when my pain spikes between patch changes. If you notice that your pain is spiking between changes that is the only other thing I would suggest you speak to your doc about. Most people on LA (long acting) meds need a short acting breakthrough med to help them through their pain spikes. You have been put on one of the best pain meds, IMO. It isn't for everyone, but most get good relief from it. I was very lucky to be referred to a Pain Management doc when I found out I had multiple lower lumbar herniated disks in Oct '02. I was dx'd with FM in March of '02. So my PM doc treats me for my back pain but mostly for my FM pain. I am getting a new MRI on my lower back as my injury has worsened and I may have some permenant nerve damage from letting it get this far. I will possibly need surgery, but my PM doc has already agreed to treat me for FM if the surgery is sucessful. Though I doubt it will be a total sucess. I am also being tested for MS since I recently have had a positive Epstein Barr Virus test. My Rheumy also suspects Chronic Immune Dysfuntion (Disorder? I can't ever remember what the "D" is for!) Syndrome.
Your meds sound good. I was like you. Tried them ALL! You get sick of it don't you? I see you are using a CNS med (Neurontin) and a muscle relaxent, something for sleep, and oh, NOW I see you are already on a b/t med. So it looks like you are covered. You know what the Wellbutrin is for don't you? Not just for the depression. Wellbutrin is considered an Selective Serotonin Reuptake Inhibitor, and is one of the most commonly prescribed medications for Fibro. It acts as a serotonin booster to increase energy and it is believed to also help with pain once the serotonin is increase which in turn, increases your endorphines (your body's natural pain killer). There are many of these SSRI classification meds on the market. I am on Lexapro for depression and anxiety. I refused all the other anti-D's prescribed for FM. I tried them, and didn't like them. Only when I was dx'd with major depression and GAD did I accept the Lexapro. There are a lot of threads recently posted here that discuss the different anti-D's like Cymbalta, Effexor, and Lexapro. You may want to take a peek and page back to find them. Just for an FYI.
As far as your husband...well I think when a spouse has FM or any other condition that limits mobility and stamina, it is sometimes harder on the other spouse who is healthy than the spouse who is sick. Reason being is that they don't understand and really never can, so it is frustrating for them. They are frustrated cuz they see you are in pain, they can't help you feel better, and sometimes they don't understand the reason you just "can't" any more. Simple tasks become MAJOR tasks. Going out to dinner, or doing social activities with friends and family sometimes are too much for the sick spouse and the healthy spouse doesn't understand, and sometimes they get mad at the spouse who is sick. There are many times when I don't go with my husband to functions from his job, like cookouts and such, or even to go see friends. He has gotten used to it, but I know it is frustrating for him because we used to have a very active social life. It takes time for your spouse to actually witness your pain. Whatever you do, DO NOT OVER DO IT for the sake of not upsetting your husband. You will regret it. One day of over doing it will bring on several days of suffering.
My advice is to find as much info about FM as you can, give it to your husband to read. Take him with you to a couple of your doctor's appts so he can witness what the doctor says to you. Maybe then the doc will take time out to explain FM to your husband. Let your husband ask questions of the doc. Let you husband read the posts on these boards. Ask him to remember when he had the flu or a cold so bad it made him achey and lay in bed, tell him that is how you feel a lot of the time. I couldn't do that with my husband, cuz, believe this! He has never been really sick or had the flu! So it was hard for him to understand the feeling! He recently suffered a case of "walking pneumonia" so now he understands a little better about fatigue and having no energy. If there is a FM support group near you, try and go to some meetings, take your husband with you. If he resists, tell him how important it is to you and that you would go with him if he were ill. Or what if you had cancer instead? He would support you then too? Same difference. You need for him to get involved in your FM and get to the "core" of your illness for him to understand. He will never fully understand cuz he will never be able to "feel" your pain. It's hard for others to understand pain they can't "see". And I know that a lot of times us Fibromights feel like we are in highschool trying to get out of gym class because we "claim" we have cramps! I think I had my period all month long when I was in highschool! LOL But that's how we feel sometimes. Like we are trying to convince our teacher that we can't participate in gym class and we get that look from the teacher like "s-u-r-e". ;)
You can find FM support groups in you area usually from the local hospitals. Call them on the phone and see if they have FM support group meetings. Or ask one of your doctors if they know of any support groups for FM. Call physical therapists and ask if they know of any FM support groups in the area. There is one at one of my local hospitals here and there is one in a nearby town also. The one in the nearby town puts an add in one of the local "community" news papers. I know what you mean about driving to see your doc no matter how far! My PM doc is nearly a 50 mile drive for me. I have told him before that I'm thankful he is so much younger than me, so I know he will out live me!
So, take it easy unpacking. Do it slow, don't worry about the mess. I know you will! :) Unpack a room at a time. Like one room a day. You have children? Let them help if they are old enough, even if they are little they can unpack their own toys and such. Let your husband do the heavy stuff. Just do one room at a time, unpack that room, get it semi-organized, like setting up your TV or your computer, then move to the next room. I personally think the kitchen is the worst room to unpack and put together! You have to put it together right the first time so it's functional for you, then you can't remember where you put things for at least 2 months! LOL Watch the packers to make sure they pack in an organized way so that when you unpack it goes smoothly. Like make sure they keep all one room in a certain set of boxes that are labeled Living Room or Bedroom. I know after awhile you get tired and just start throwing things in boxes, then when you go to unpack you find your kitchen silverware in a box with your undie pants. :)
Your meds sound great. I gotta tell you that sometimes it takes awhile to get to the right dose of Duragesic. What is your dosage level? Are you experiencing any nausea from the Duragesic? My PM doc prescribed an anti-nausea med with my first couple scripts of the Duragesic. Oh and there is now a generic brand of Fentynal. Two actually. One is called MYLON and it totally sucks. Go to the Pain Management board and look for threads that discuss the "Patch". MYLON for some reason put out a product that is so inferior to the name brand, doctors are looking to get it pulled from the market. It is wafer thin and you can barely see the medication gel in the patch. The other generic is SANDOZ. Sandoz is the better of the two, however it doesn't stick worth a hoot. It usually comes loose only a few hours after you apply it. It isn't uncommon for the patch to come loose, but the Sandoz comes loose more easily, which ends up causing the gel to dry out. It also doesn't have as much medication in it as the Duragesic brand. When a company is allowed to manufacter a generic brand, the FDA regulates the amount of the primary medication it must contain. And it usually isn't as much as the brand name. It isn't usually a big difference, not enough to notice anyway. Like Percocet is Oxycodone and comes in different doses. Like 10mg, well the generic brand Endocet only has to have maybe 97% of Oxycondone in it, where the brand name has 100%. Understand? But for some reason, when the Duragesic patented was allowed to expire and generic brands could be made, they seem to have more problems than most generic meds out there. I have my doctor write my Duragesic script to "fill brand name only". It only costs maybe $20 but it's worth it.
Keep us posted and welcome to your new family of the Mighty Fibros! :) Post any time you feel you need a little extra support, a shoulder to cry on, to share a happy day with us, or reply to any post where you think you could help someone else. I hope that we hear a lot more from you.
Here's wishing you a good spirit,
tk