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Topic: 22 BAD FIBRO and a mommy too HELP
Hey all,
I had a RNYGP at 18 my symptoms SLOWLY started after that. I met my child's father at 20 and SLOWLY got worse after that. We are not together and after the birth of my child i felt as if my FIBRO kicked in at high gear. I feel it getting worse. My hands feel as if they are arthritic crimpled and always feel cold to the touch as do my fee. My body is in throbbing pain i walk with a limp. I live at home where my mom is a huge help with childcare. What can i do to get better and pain relief. My dr team just don't understand that stuff wears off and that certain meds effect us differently. ( i would ask my surgeon to help but he is retired last i heard)
Here is a list of what i tried
Cymbalta
Ultram 100mg am & 100mg pm
Ryzolt 100mg (extended release ultram)
Fioricet without codeine
Darvocet-N100/650 1 am 1 pm
Lyrica 100mg twice daily
Celexa
Savella
Melatonin
I got testing done through a rheumatologist and am awaiting answers for those teszts like Lyme and Lupus. I see a pain dr who manages my meds. I have tried chiropractor and i absolutely can't take NSAIDS i have tried an infants liquid dose with maalox and that leaves me with PAIN PAIN PAIN for 3 days. My dr's are getting frustraited with me for not responding to the meds or having bad side effects. The Savella made me so constipated that castor oil and laxative pills took over 24hrs to cause 1 small BM. I stopped taking the Savella after 2 weeks when that problem didn't get better. I literally struggle to move. I drop things very often. I have NO energy. I have junky memory. I am weak. I can't work. I cry about the pain it is all over my body and feels crippling and its is 24/7 i wake up in pain and go to bed in the same excruciating pain. My dr's are leery about increasing meds because most patients don't seem to be this bad and most respond well and don't have the fast wear off time. I feel as if my meds don't touch my pain. I have tried days without it and i feel no different then the days i take it. My dr's are leery of putting me on higher medications for fear that with my age and stuff it will send me down a road where i will need more and more due to tolerance. I am being compliant with my dr's i do as they ask but am not getting relief. I have met others with fibro but none say they suffer like i do. My sppech can sometimes slur. Any advice or helpful feedback please...
I had a RNYGP at 18 my symptoms SLOWLY started after that. I met my child's father at 20 and SLOWLY got worse after that. We are not together and after the birth of my child i felt as if my FIBRO kicked in at high gear. I feel it getting worse. My hands feel as if they are arthritic crimpled and always feel cold to the touch as do my fee. My body is in throbbing pain i walk with a limp. I live at home where my mom is a huge help with childcare. What can i do to get better and pain relief. My dr team just don't understand that stuff wears off and that certain meds effect us differently. ( i would ask my surgeon to help but he is retired last i heard)
Here is a list of what i tried
Cymbalta
Ultram 100mg am & 100mg pm
Ryzolt 100mg (extended release ultram)
Fioricet without codeine
Darvocet-N100/650 1 am 1 pm
Lyrica 100mg twice daily
Celexa
Savella
Melatonin
I got testing done through a rheumatologist and am awaiting answers for those teszts like Lyme and Lupus. I see a pain dr who manages my meds. I have tried chiropractor and i absolutely can't take NSAIDS i have tried an infants liquid dose with maalox and that leaves me with PAIN PAIN PAIN for 3 days. My dr's are getting frustraited with me for not responding to the meds or having bad side effects. The Savella made me so constipated that castor oil and laxative pills took over 24hrs to cause 1 small BM. I stopped taking the Savella after 2 weeks when that problem didn't get better. I literally struggle to move. I drop things very often. I have NO energy. I have junky memory. I am weak. I can't work. I cry about the pain it is all over my body and feels crippling and its is 24/7 i wake up in pain and go to bed in the same excruciating pain. My dr's are leery about increasing meds because most patients don't seem to be this bad and most respond well and don't have the fast wear off time. I feel as if my meds don't touch my pain. I have tried days without it and i feel no different then the days i take it. My dr's are leery of putting me on higher medications for fear that with my age and stuff it will send me down a road where i will need more and more due to tolerance. I am being compliant with my dr's i do as they ask but am not getting relief. I have met others with fibro but none say they suffer like i do. My sppech can sometimes slur. Any advice or helpful feedback please...
Topic: RE: How bad before retirement or disability?
I was enrolled through a pain program through my insurance. it's a great program but I had 2 of the doctors tell me I needed to quit. I think I knew this, but didn't want to admit it. Our plan was for my husband and me to work for another 5 years, pay the bills off in 4, stash money in the 5th, retire and then have our house paid for in 7-8 years. I retired this year and am now going thru bankruptcy.
You have my sympathies with your job. I worked at a college in the distance education department. I was on the computer more than not. I was would fall asleep at my desk. (Two good friends would keep an eye on me, cover for me, and wake me up. I had trouble staying awake for the commute which was excrutiating, would barely get through the week and sleep the weekend in pain, hoping to gain strength for Monday. I know what your fingers feel like--it's awful. I did hide my fibro fog well, but it was getting harder and harder to hide it. I couldn't read and used to read 4-5 books a week. Simple instructions were hard to follow. Meetings were awful--another time to fall asleep. Somedays a cane helped most didn't.
I've been off this entire year and am just now beginning to read. I take daily naps and have a great stretching routine I'm doing from my physical therapist.
Meds: 25 fentanyl patches (hate them, don't work well and make me sweat like crazy--they're being changed next week), Nortriptyline at night, 2 cymbalta in the morning, norco for breakthrough. I was doing well with with 4-6 morphine in place of fentanyl, but I couldn't go to the bathroom with mega stool softeners and prescription medicine. My doctor has talked about methadone. I guess will discuss that next week. Opana and Gabapentin were useless.
I have fibro, migraines, and moderate to severe arthritis in my tailbone, thoraic & cervical spine and severe in both knees. Part of what bothered me is that with the knees, they can replace them when it gets too bad, but there isn't anything to be done with the back. They doctor told me if I do my exercise routine and remain active, there is no reason to think that it will progress.
I still have bad days, but being off work allows me to take naps and pace myself (when I pay attention), do my exercises, and eliminates that painful drive. I can do more aroudn the house now and free my husband's time up some. It has also eliminates a lot of stress. I am definitely in better shape and much more limber.
I wish I could help you with your decision; it's definitely a hard one. Financially for us it was awful, but for my health, I can now see it was the best thing for me.
You have my sympathies with your job. I worked at a college in the distance education department. I was on the computer more than not. I was would fall asleep at my desk. (Two good friends would keep an eye on me, cover for me, and wake me up. I had trouble staying awake for the commute which was excrutiating, would barely get through the week and sleep the weekend in pain, hoping to gain strength for Monday. I know what your fingers feel like--it's awful. I did hide my fibro fog well, but it was getting harder and harder to hide it. I couldn't read and used to read 4-5 books a week. Simple instructions were hard to follow. Meetings were awful--another time to fall asleep. Somedays a cane helped most didn't.
I've been off this entire year and am just now beginning to read. I take daily naps and have a great stretching routine I'm doing from my physical therapist.
Meds: 25 fentanyl patches (hate them, don't work well and make me sweat like crazy--they're being changed next week), Nortriptyline at night, 2 cymbalta in the morning, norco for breakthrough. I was doing well with with 4-6 morphine in place of fentanyl, but I couldn't go to the bathroom with mega stool softeners and prescription medicine. My doctor has talked about methadone. I guess will discuss that next week. Opana and Gabapentin were useless.
I have fibro, migraines, and moderate to severe arthritis in my tailbone, thoraic & cervical spine and severe in both knees. Part of what bothered me is that with the knees, they can replace them when it gets too bad, but there isn't anything to be done with the back. They doctor told me if I do my exercise routine and remain active, there is no reason to think that it will progress.
I still have bad days, but being off work allows me to take naps and pace myself (when I pay attention), do my exercises, and eliminates that painful drive. I can do more aroudn the house now and free my husband's time up some. It has also eliminates a lot of stress. I am definitely in better shape and much more limber.
I wish I could help you with your decision; it's definitely a hard one. Financially for us it was awful, but for my health, I can now see it was the best thing for me.
Topic: RE: Living with Fibro and husband
Savella, also known as milnacipran was just recently added to the list of approved Fibro drugs.
Found the Prescribing Information and everyone looking into or on that drug needs to check out the chart on page 7 of the pdf. I'm not saying it's bad, just be aware. The ones listed in plain sight are just these:
The most common side effects associated with Savella treatment is nausea. In clinical trials, patients experiencing nausea described it as mild to moderate. Other common side effects were headache, constipation, dizziness, insomnia, hot flush, hyperhidrosis (excessive sweating), vomiting, palpitations, increased heart rate, dry mouth, and hypertension.
This is not a complete list of side effects.
Liz
Found the Prescribing Information and everyone looking into or on that drug needs to check out the chart on page 7 of the pdf. I'm not saying it's bad, just be aware. The ones listed in plain sight are just these:
The most common side effects associated with Savella treatment is nausea. In clinical trials, patients experiencing nausea described it as mild to moderate. Other common side effects were headache, constipation, dizziness, insomnia, hot flush, hyperhidrosis (excessive sweating), vomiting, palpitations, increased heart rate, dry mouth, and hypertension.
This is not a complete list of side effects.
Liz
Duodenal Switch (Lap) 01-24-11 | Surgeon: Stephen Boyce | High weight: 250 in 2002 | Surgery weight: 203 | Lowest weight: 121 | Current weight: 135 | Goal weight: 135
Topic: RE: Living with Fibro and husband
Thanks for the info. Wish I could get hubby on hte computer. I took savella with no good results but am planning on talking to my doctor about a review of all my medicines. Thanks again.
Topic: RE: Living with Fibro and husband
Liz....
Wow, what good information! I am going to get the book and information on the 5 day pouch test. It sounds like that would be a good thing for me to do to help get me back on track. I'm having a lithotripsy tomorrow for a kidney stone but plan on talking with my doctor about a medicine review and changing some things. I wish I could stop all these meds.
Thanks,
Sara
Wow, what good information! I am going to get the book and information on the 5 day pouch test. It sounds like that would be a good thing for me to do to help get me back on track. I'm having a lithotripsy tomorrow for a kidney stone but plan on talking with my doctor about a medicine review and changing some things. I wish I could stop all these meds.
Thanks,
Sara
Topic: RE: Question
i thought that we couldn't take cymbalta after ryn? NO? I was on that b4 surgery....
and does savella make you sleepy?
and does savella make you sleepy?
Topic: RE: Does fibro affect the tummy?
Yes it could be from the Fibro, yes it very well can be a flare up. I have an amazxing dr here in CT and have been amazed at what he has found. Last winter I had a migrain for 5 days and swelling at the back of my head and neck, after 2 CAT scans and a MRI they determined it was a fibro flar up, I have had other eppisodes also like that. But I find when I know i am having a fare up that my stomach also acts up. Have you discussed with your md the chance of a flare up and if a increase in Fibro meds for a week would help? Good luck and feel well,
Topic: RE: Living with Fibro and husband
Lyrica is know for weight gain, so i would discuss that with your Dr there are other meds out there that work and dont have that side effect. http://www.savella.com/ is a pretty good, site and the medication is what I am on and and haveing some luck. there are lots of other websites out there that have info that could help informing the uninformed. Good luck
Topic: RE: Question
I am taking Savella and it seems to be helping, I have been in it for just over a month now and there is imporvement. My dr picked it cause it has the lest in side effects and weight gain is not one of them! Good luck, and great job congratz!~