Fibromyalgia Thread

[stampin_fool]

Subbing as my sister has Fibromyalgia. I like to keep up on new treatments and what people are doing.

Hi Rachel,

Hope your sister is doing well. I recently was put on Gabapentin and it really seems to be working well. I haven't had any really bad pain since a couple of days after I started this, with the exception of my short trip to WDW but that was my own fault as well as my older son who wanted to practically run through the parks. We were only there for four days and he was trying to get in everything in those few days. When we got home (and on the way home) I pretty much crashed for a few days. Now that I have recovered from that I have been doing pretty well with this new med.

Hope your sister is able to find something that works for her!

Ronda

 

[stampin_fool]

BTW I handwrote 6 pages of my exam today and I aced it on 3 hours sleep!

I have a hard time writing for any length of time now and can't imagine writing 6 pages! Your hand must be killing you!

 

[tiggspring]

I have a hard time writing for any length of time now and can't imagine writing 6 pages! Your hand must be killing you!

I know what you mean. My hands hurt constantly even on good days and I can't feel the tips of my fingers either. I do this neat little trick where I poke my fingertips with the tip of a steak knife. It completely freeks people out LOL. I cant imagine writing that much either. Great job Bright eyes

 

[ireland_nicole]

Hi y'all; just wanted to let those of you who have been praying and sending pixie dust for me that I think I got a job today It's as a private duty nurse with a pediatric homecare agency; the staff was all amazing, they have fantastic training and best (and worst) of all is that all the nurses are per diem- downside is no guaranteed income/upside I get to have total flexibility on hours. The nurses I had a chance to talk to today (the field nurses are in the office for compliance) all said they never offer to work a shift they don't get; and the company is paying for all the training, so I figure if they're putting that investment in, they're planning to get some work out. Because my background is pediatric and adult hospice, I'll probably be primarily working with families in that situation. They even said today that we need to "rush" i.e. shorter time calender days but longer time each day because they have a family coming on service that lives right by me and is in a hospice situation. I expect it to be emotionally draining, but rewarding, and I am over the moon about the flexibility to be able to take care of my kids needs and their average 4-5 dr. visits per month. Just wanted to check in and say "thanks"- also, I have another job interview (2nd) with a local homecare. Technically I could do both, so I'm trying to be open and see what comes of it.

 

[tiggspring]

Hi y'all; just wanted to let those of you who have been praying and sending pixie dust for me that I think I got a job today It's as a private duty nurse with a pediatric homecare agency; the staff was all amazing, they have fantastic training and best (and worst) of all is that all the nurses are per diem- downside is no guaranteed income/upside I get to have total flexibility on hours. The nurses I had a chance to talk to today (the field nurses are in the office for compliance) all said they never offer to work a shift they don't get; and the company is paying for all the training, so I figure if they're putting that investment in, they're planning to get some work out. Because my background is pediatric and adult hospice, I'll probably be primarily working with families in that situation. They even said today that we need to "rush" i.e. shorter time calender days but longer time each day because they have a family coming on service that lives right by me and is in a hospice situation. I expect it to be emotionally draining, but rewarding, and I am over the moon about the flexibility to be able to take care of my kids needs and their average 4-5 dr. visits per month. Just wanted to check in and say "thanks"- also, I have another job interview (2nd) with a local homecare. Technically I could do both, so I'm trying to be open and see what comes of it.

Yea!!! I'm so happy for you! Just dont forget to take care of you

Except for my first year, I did all agency work and I LOVED it. I had to work full time take care of DH1 and go to School full time. I did not need a nurse manager getiing all upidy when I needed time off for a chemo treatment or a final exam. If you are open you will get to do so much.

I usually had three agencies that I worked with. One that was my primary and I gave them first dibs and made them my priority. The other two were my back ups and they knew it. If they really needed somone they would call and see if I could squeeze them in. When I needed work I would just see what they had available. There is always a shortage of temps.

I did spend months and in one case a year full time on the same case or hospital Ward. I would never go to full time staff position for medical again. In psych you need to develop relationships but in medical much of your care (except hospice and elder care) is short term. With the forementioned they keep the same staff for continuity for both PT and their timesheets so dont worry you will get to bond with your families. I always felt so honored by the hospice families that let me "in" but it is painful too. keeps your life in perspective

 

[ireland_nicole]

Amen, sister! I always felt the same way about "my" families; I felt so privileged to be allowed into their lives at such a vulnerable and intimate time, and really appreciated the blessing of knowing each and every day that what I did made a difference. This agency is like your primary, I think. All homecare, all pedi, all by per diem RN's. So we're not doing the "fill ins" for the primary, we are the primary (except when you don't want to be; just getting in extra shifts, etc.) The only salaried positions are the case managers. From what the nurses were telling me, their goal is to provide continuity in staffing. Especially with complex kiddos, and being in their home, having the same people as much as possible is really better for everybody. I'm almost afraid to think it will actually work out, but I'm finally starting to feel excited about it. I'm really lucky in that the more I am able to work, the quicker we'll get out of debt, but in terms of "making it" month to month, everything over $5-600 is "gravy" toward paying down debt faster; so there isn't a huge amount of pressure to get the 50 hours/week. I think my dream scenario would be to work 3 10 hour days with one family, and then pick up a couple extra shifts a month. The agency said this is definitely doable, and they manage it all the time, so we'll see how it goes. Thanks so much for your post; it's definitely comforting to know that the whole agency thing is workable in the long term. I'm already on the list for another agency, but it's definitely not well run, and the whole thing is not something I want to do on a regular basis. This place is different, they're definitely a team, it just felt "right"

 

[tiggspring]

One downside to temping is that some nurses wont trust you at first. I once had a Nurse follow me around on a oncology ward. After about two hours I finally asked her what was up. That week she had another temp who she had asked to empty a foley bag. When the nurse walked in the room the girl was attempting to take apart the central line!
Needless to say she didnt know hat she was doing.

On the other hand I got to do extensive rounds on the burn unit, open heart surgery in the 80's when it was just comming into its own, Aids patients before all the new drugs. The oportunities I had and the families I met were amazing. The huge upside was that I found that when you become like "staff" sometimes they underappreciate you like staff. At that point you can ask to be reassinged to another facility and when you go back to where you were working lo and behold they treat you well again without any confrountation etc..

Can you tell I LOVED working?

Congrats!

 

[tiggspring]

Amen, sister! I always felt the same way about "my" families; I felt so privileged to be allowed into their lives at such a vulnerable and intimate time, and really appreciated the blessing of knowing each and every day that what I did made a difference. This agency is like your primary, I think. All homecare, all pedi, all by per diem RN's. So we're not doing the "fill ins" for the primary, we are the primary (except when you don't want to be; just getting in extra shifts, etc.) The only salaried positions are the case managers. From what the nurses were telling me, their goal is to provide continuity in staffing. Especially with complex kiddos, and being in their home, having the same people as much as possible is really better for everybody. I'm almost afraid to think it will actually work out, but I'm finally starting to feel excited about it. I'm really lucky in that the more I am able to work, the quicker we'll get out of debt, but in terms of "making it" month to month, everything over $5-600 is "gravy" toward paying down debt faster; so there isn't a huge amount of pressure to get the 50 hours/week. I think my dream scenario would be to work 3 10 hour days with one family, and then pick up a couple extra shifts a month. The agency said this is definitely doable, and they manage it all the time, so we'll see how it goes. Thanks so much for your post; it's definitely comforting to know that the whole agency thing is workable in the long term. I'm already on the list for another agency, but it's definitely not well run, and the whole thing is not something I want to do on a regular basis. This place is different, they're definitely a team, it just felt "right"

This agency sounds perfect. Just keep an agency or two in your back pocket for the slow times that will inevitably come. That messed up agency will most likely have work available during slow times because, well because they are messed up. It may frustrate you that those clients dont get as good of care as your usual families but you will get some work to help your family and you can give them great care while your there. Some of my clients decided to leave the lesser agency because my care was better than they were used to and they decided to make a switch. Of couse I could not "take" them with me to my primary agency. just encorrage them to complain to managment and interview different places until they were happy.

 

[brighteyes]

Hi Rachel,

Hope your sister is doing well. I recently was put on Gabapentin and it really seems to be working well. I haven't had any really bad pain since a couple of days after I started this, with the exception of my short trip to WDW but that was my own fault as well as my older son who wanted to practically run through the parks. We were only there for four days and he was trying to get in everything in those few days. When we got home (and on the way home) I pretty much crashed for a few days. Now that I have recovered from that I have been doing pretty well with this new med.

Hope your sister is able to find something that works for her!

Ronda

Hi Rachel,

Welcome Rachel. There are a number of different meds. I have been taking Lyrica which has been working well. When I first started, it was a wonder drug and my pain was completely gone. After more than a year, some of the pains are returning. I also take Amitryptyline for sleep and pain. It doesn't work so well for sleep anymore, but still works for pain. I also take multivitamin, calcium and vit D. Hope you sister is doing well.

Ronda,

My hand was killing me, and I still did not get a good night sleep. But I had a good sleep last night and feel pretty good today. I am registered with disability services at my college, which means I can have extra time, or use a computer to write my exams. I did not register for this exam in time though, so I had to write. Next time I will register in time.

Tiggspring,

Are things going better for you now? I can totally relate to the tired thing. Most days there comes a period of time, when just like a Mack truck hitting me, all of a sudden I cannot keep my eyes open. Even when I am driving home (10 min drive) sometimes it is difficult to stay awake. Or if I sit on the couch I am asleep within minutes. I can tell you really loved your work.

Ireland nicole,

Congrats!!! Good for you!!! When is your second interview?? It sounds like this job will be good because it is flexible! That is what you need.!!!! Awesome, way to go.

OMG! I got my marks for my first exam, and I only got 65% I don't think in my life I have ever gotten that low of a mark. I hate it when I get below an 80, but all I care about right now is passing. There was just way too many names to memorize etc. and with my brain fog, it was not a good exam. But my 2nd exam went very well so we just have to see what that mark is.


Hope everyone has a good weekend, and a good week.

 

[Tweevil]

Hi everyone!

I posted previously about coming off my meds and let me tell you...coming off Cymbalta is EVilllllll! I did good for a day and then wham! dizziness, vision issues, SLAM into a wall. I have to go back to taking it every two days I guess and then taper from there.

Can't get a Dr's appt for the muscle thing until Dec 8th but the CPAP is still coming on Thursday. Maybe it will help me get some sleep. (fingers crossed!)


I am glad to report that I worked on the boat yesterday for a while - feel bad now but not anything I can't handle. My arms and fingers are yelling at me!

Anyhoo.... I hope everyone is doing well and is pain free for the week to come!

 

[tiggspring]

Hey brighteyes sorry to hear about your grade I know how frustrating that must be. You are brave to keep pushing. Dont give up!

DH keeps telling me that when things settle down with the kids I should go for phd I wanted online with Disability accomodations. Honestly I don't know how I could ever do that. I can review his work on good days but on bad I cant folow sentence to sentence. As far as reading I can't remember what I read so if I read a novel it has to be one he has read so I can ask him every chap or two what happened in previous chapters. Only thing I can read is things like history/psych/med/politics because I have such a strong background that I can follow along and enjoy it in the moment. Just dont ask me what was new in what I've read and Im ok. If Phd involved all papers and not one single test and I didnt have to survive a oral dissertation review maybe I could finish it in 10yrs instead of 4-7. I'm not completely giving up though.

I am finally out of my "coma" today is first day I feel usual tired but at least awake. I hate feeling that out of it. It reminds me of the first two years where the med changes made me sleep 16-20hrs a day

Rachel: Hope your sister had a good week. FYI I mostly gave up on meds long ago. I take ativan for chest pain as needed but never more that a week in a row or it stops working, vicoden as needed but again if I take it too much I just need more and it stops working, excedrine migraine for headaches, lots of suppliments too many to list here but flax, garlic and ginger, magnesium are my big ones and meletonin for short periods for sleep. My friend is a custom arroma therapist and that actually has helped with the concentration but not sleep.

Brighteyes have you tried custom aroma therapy? My DH says it is helping him concentrate. You need to find somone who mixes ther own oils then lets you smell different combinations until you "feel" the sleepyness,alertness etc you are looking for. really interesting. My DD uses an over the counter car sicknes blend with great success. Might help you study. just rub it on just before you need to concentrate seems to last a few hours but just like meds if you use it too much it will stop working until you give a break for a week or two.

Pain free vibes and Pixie dust to all

 

[stampin_fool]

Hi Everyone,

Hope all of you are having a pain free day! Ireland Nicole congrats on the job! That is awesome that they are willing to be flexible with your hours! I have been thinking about going back to work but am not sure if I will be able to find something flexible, also not sure what I would want to do. I was a paralegal for years until we moved and now I am sure being out of the field for six years and it being a new state with different laws I am not sure my foggy mind could handle trying to learn all of the differences, LOL.

Brighteyes I am glad to hear that the college makes accommodations for you. This is great to hear, especially as my son gets older and really wants to go to college but may need accommodations made for him. I wasn't sure if colleges would do such a thing to this is very encouraging!

On another note, I noticed that a lot of you gals mentioned cooking in your crock pots as it is much easier for some of us. I thought it might be nice to share some recipies with each other (since I am using mine today) and didn't know if any of you would be interested. Today I am making Taco Soup so I thought I would share that recipe. It is so yummy we call it Crack Soup! Here it is:

Taco Soup
2 cans black beans
2 cans kidney beans
1 can navy beans
1 can corn
1 can rotel
1 pkg taco seasoning mix
1 pkg ranch dressing mix
1 lb ground beef (cooked)

Throw this in crock pot, mix and cook on high for 6 hours or low for 8 hours. Serve with cornbread, yummy!!!!

Hope you all have a great day!

Ronda

 

[SeaSpray]

Hi everyone

I just did a search for "fibromyalgia" on the Community Board and saw someone mention this thread, so I thought I'd come and check it out.

I have fibromyalgia (officially diagnosed over a year ago, but had the symptoms for years), and actually I'd been practically symptom-free for the last several months... until a few weeks ago. It's back. And I feel lousy. I had almost forgotten how bad this was/is.

Anyway, just wanted to say "Hi" and I'll be reading along to see how everyone's doing.

Oh, for a little background: Last year upon being officially diagnosed, I started taking Lyrica, with pretty good results, once I got over the "high" feeling. LOL I stopped taking it (for no real reason) last December, and didn't have a need to resume taking it again, until now. I have an appt with my doctor on November 1st, and I'll talk to him about a new prescription.

Prior to the Lyrica, I was put on Amitryptyline but didn't feel any improvement with it. I currently take Ambien at night for a good night's sleep, and the occasional Ativan for anxiety (unrelated to the fibromyalgia).

It's going to be a long winter.... this laptop, this recliner, and this heating pad are going to become my best friends again. I do work Monday-Friday doing accounting work, 8:30am - 3:30pm, but once I get home I'm so exhausted. I'm making sure to keep up on the laundry, dishes, and meals, with help from my DH and DSs, but other than that I have no desire or strength to do much else. DSs do the food shopping, just the thought of walking up and down the aisles is exhausting!

I'm optimistic though.... I always try to think of others who are far worse off than I am, and I try not to feel sorry for myself... but this really stinks!

 

[stampin_fool]

Welcome to our group! Glad you found us!

Good luck with your doctor's appt! Hopefully with a new prescription you will be pain free again soon!

Ronda

Hi everyone

I just did a search for "fibromyalgia" on the Community Board and saw someone mention this thread, so I thought I'd come and check it out.

I have fibromyalgia (officially diagnosed over a year ago, but had the symptoms for years), and actually I'd been practically symptom-free for the last several months... until a few weeks ago. It's back. And I feel lousy. I had almost forgotten how bad this was/is.

Anyway, just wanted to say "Hi" and I'll be reading along to see how everyone's doing.

Oh, for a little background: Last year upon being officially diagnosed, I started taking Lyrica, with pretty good results, once I got over the "high" feeling. LOL I stopped taking it (for no real reason) last December, and didn't have a need to resume taking it again, until now. I have an appt with my doctor on November 1st, and I'll talk to him about a new prescription.

Prior to the Lyrica, I was put on Amitryptyline but didn't feel any improvement with it. I currently take Ambien at night for a good night's sleep, and the occasional Ativan for anxiety (unrelated to the fibromyalgia).

It's going to be a long winter.... this laptop, this recliner, and this heating pad are going to become my best friends again. I do work Monday-Friday doing accounting work, 8:30am - 3:30pm, but once I get home I'm so exhausted. I'm making sure to keep up on the laundry, dishes, and meals, with help from my DH and DSs, but other than that I have no desire or strength to do much else. DSs do the food shopping, just the thought of walking up and down the aisles is exhausting!

I'm optimistic though.... I always try to think of others who are far worse off than I am, and I try not to feel sorry for myself... but this really stinks!

 

[Earstou]

Does anyone else have trouble with shoes? If I wear a different pair than the day before, the muscles in my feet and legs cramp and ache, so I'm better off having multiple pairs of the same shoe and only wearing that shoe.
I wear SAS sandals in the summer, but haven't found a good winter shoe.

I also have wide feet and a bone spur on the side of my big toe joint, so finding comfortable shoes is almost impossible. Plus I need a low heel.
Anyone have suggestions for comfortable shoes?

 

[EDuke98080]

Does anyone else have trouble with shoes? If I wear a different pair than the day before, the muscles in my feet and legs cramp and ache, so I'm better off having multiple pairs of the same shoe and only wearing that shoe.
I wear SAS sandals in the summer, but haven't found a good winter shoe.

I also have wide feet and a bone spur on the side of my big toe joint, so finding comfortable shoes is almost impossible. Plus I need a low heel.
Anyone have suggestions for comfortable shoes?

Any time that I change shoes my legs and hips will ache for days. In summer I wear sneakers and in the winter I wear UGG boots. In between I will wear Clarks but find that the "clog" style sometimes bothers my back.

 

[EDuke98080]

Hi all!

I don't post very much but I can't tell you how much it means to know that I am not alone in this wierd Fibro sleep flip flop. My family and friends have always said just get up early one day and then go to bed earlier. In a few days you'll be all turned back around. No one seems to understand how difficult it is to drag yourself out of bed and ache all over and get through the day. On top of that, you still can't sleep that night and feel worse as every day of early rising passes. To recover from a trun your sleep around try can take weeks! Thanks you for all being supportive and honest and helpful, it is comforting.

 

[Tweevil]

Hi all!

I don't post very much but I can't tell you how much it means to know that I am not alone in this wierd Fibro sleep flip flop. My family and friends have always said just get up early one day and then go to bed earlier. In a few days you'll be all turned back around. No one seems to understand how difficult it is to drag yourself out of bed and ache all over and get through the day. On top of that, you still can't sleep that night and feel worse as every day of early rising passes. To recover from a trun your sleep around try can take weeks! Thanks you for all being supportive and honest and helpful, it is comforting.

The go to bed earlier, wake up thing is what I am always being told as well. it's kinda hard when the body won't cooperate. Not to mention I have always been a vampire - love the evenings! I find that Saturdays are lost becasue I seem to want to catch up on the sleep. Hopefully the CPAP will make a difference - never thought I would look forward to the darth vader device but now it's a matter of getting sleep or losing my job! I can't use Ambien anymore because it doesn't work anymore (reg or CR). That is why I am still up at 1a EST.

You are not alone - hugs!!

 

[brighteyes]

The sleep flip is so frustrating. I have people tell me do not have naps. There comes a time in the day when I literally cannot keep my eyes open. Some days I don't have a nap but some days if I did not have a nap I would not make it till bedtime.

I find if I go to bed earlier I lay there awake anyways and if I do fall asleep, I will be awake by 3.

However I had a question for you all, I was at the hospital most of the day today. Yesterday I woke up feeling very good, was amazed that I wasn't tired. However, after an hour I felt very sleeply but tried to stay awake. I had dizziness and nauseau all day. I spent the day on the couch sleeping on and off. Went to bed about 12:30 am and had the most excruciating chest pain that went around to my back. I had three episodes and in all they lasted about 5 min all together. My son was very scared. I almost felt like I was having a heart attack. It was so painful. I have never had that much pain. I have had fibro chest pains but this was different.

I went to bed thinking if it really is a heart attack, I will wake up with the pain. Stupid, I know for a girl who used to work at a clinic and triaged patients, but was so exhausted I jsut wanted to lay down and hope the pain didnt come back. So this morning my DS was telling me he wanted to stay home and take care of me.

I was kinda worried but felt ok this morning but went to the hospital anyway. They did an EKG (I think) he said I had an abnormality on it. Don't know what that meant. He wanted to do a stress test and an echo on me, and I told him I just had my heart checked in the summer and I was fine. So he got the results and those were fine but now had this abnormality. I didn't ask him what - Im not good with drs. I do know that he said I didn't have a heart attack but if it happens again come immediately to the hospital. My son said that the dr. said that I could have had this abnormality and just not known about it.

so my question is, have any of you had this before, and what the heck should I do now???

 

[tiggspring]

The sleep flip is so frustrating. I have people tell me do not have naps. There comes a time in the day when I literally cannot keep my eyes open. Some days I don't have a nap but some days if I did not have a nap I would not make it till bedtime.

I find if I go to bed earlier I lay there awake anyways and if I do fall asleep, I will be awake by 3.

However I had a question for you all, I was at the hospital most of the day today. Yesterday I woke up feeling very good, was amazed that I wasn't tired. However, after an hour I felt very sleeply but tried to stay awake. I had dizziness and nauseau all day. I spent the day on the couch sleeping on and off. Went to bed about 12:30 am and had the most excruciating chest pain that went around to my back. I had three episodes and in all they lasted about 5 min all together. My son was very scared. I almost felt like I was having a heart attack. It was so painful. I have never had that much pain. I have had fibro chest pains but this was different.

I went to bed thinking if it really is a heart attack, I will wake up with the pain. Stupid, I know for a girl who used to work at a clinic and triaged patients, but was so exhausted I jsut wanted to lay down and hope the pain didnt come back. So this morning my DS was telling me he wanted to stay home and take care of me.

I was kinda worried but felt ok this morning but went to the hospital anyway. They did an EKG (I think) he said I had an abnormality on it. Don't know what that meant. He wanted to do a stress test and an echo on me, and I told him I just had my heart checked in the summer and I was fine. So he got the results and those were fine but now had this abnormality. I didn't ask him what - Im not good with drs. I do know that he said I didn't have a heart attack but if it happens again come immediately to the hospital. My son said that the dr. said that I could have had this abnormality and just not known about it.

so my question is, have any of you had this before, and what the heck should I do now???

I'm on my phone so I hope this makes sense.

Back in Jan 08 I began having unusual chest pain and noticed my heart skipped every fourth beat. I went to my gp and had a ekg then a ecocardiogram (sonagram of the heart) It showed the abnormality in the rythum but no "problem". Not satisfied with "we don't know why"I went to a cardiologist because "I don't want to go to the park with my kids and drop dead". He put me on a heart monitor for a month. Every time I felt something odd I would record it then send it by phone to a lab where a cardio tech/cardiologist could check it immediately. It confirmed I had a harmless skip. For 10 months my heart "stopped" every fourth beat and I had to believe it was ok. Then it went away on its own for no reason. My dr can't tell me why.

My advice is to go back to the dr immediatly tell them you are alone with 13yr old and need to be sure you will not die of a heart attack since you have many heart attack symptoms with the fibro how would you know the real thing. Ask for echocardiogram and most importantly a heart monitor.If at all possible bring somone with you this time. You do not feel well and are probably foggy and this is too important to be wrong about.It is probably a weird fibro thing but your son needs his mother. Do not take no for an answer. If you are wrong you had a test for nothing if there is something there it could save your life!

Please check in tomorrow so we know your ok. Even if you just type hi!