Guest guest Posted December 17, 2007 Report Share Posted December 17, 2007 >Hello Ladies, I am right there in the middle of this pile when it comes to emotions. Until this thread, I thought it was just ME. I so appreaciate those that are spilling themselves out for those of us that need it. Your timing could not be better, I might add. My doctor started me on Lyrica (med made specifically for fibro) and he did not want to get my hopes up and said to give it a week. Presently, they are offering a full week free from the pharmaciutical. I can tell you here and now, I have not taken my percodan or my oxycontin since I took that first dose! I saw the difference in less than the first half hour! I had nerve pain shooting all over the place and the worst was shooting through the front of my pelvic bone into buttocks and down the leg to the foot. I was in tears trying everything I could think of to stop that terrible pain! Well, as my Mother said...she has her old back! I know everyone is different especially when it comes to meds working for them or not but I'd like to know who else has tried this med?? I don't feel like my heart is on my sleeve either....I have hope, real hope! God Bless everyone and I look forward to seeing any replys to this thread. Huggs! Dutchie/ > Hi Darlena, > I have a tempurpedic bed too that is an electric bed and I really like > it. Mine doesn't have massage but that's fine as massage seems to > really bother me. I have a recliner that has massage and I had to have > that feature deactivated. If it is so cold in that garage, I would > suggest a very warm down comforter if you can get one. I bought one at > LL Bean when I first moved here and I bought the warmest one. I ended > up having to return it as it was too warm. I went down to a lower > warmth level. If you can get an electric blanket that might work too. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2007 Report Share Posted December 17, 2007 Funny you should say that.... I am very senitive emotionally and more so in my personal life. Stress is not something I can deal with well in my personal surroundings. This weekend my bf lost the keys in the snow while snowblowing the driveway I broke down and cried after we searched for hours....We had to spend over two hundred dollars at this time of year to move the vehicle. Not to mention I could barely move when I got inside. My muscles hurt so bad all the time. I try not to focus on it as I have to stay busy so not to get depressed. BUT there are times when its crippling. MY ankle is swelling on my left foot and the bottoms of my feet seem to have so much pain exp. in the morning, its like getting hit on the bottom of my feet by a hammer. Anyone else?? > > Do some of you with CFS/ME/FBS find yourselves emotionally fragile from > time to time. Do you find yourself just worn down and not having the > energy to cope with difficult people or situations that you'd under > normal circumstances would not have trouble handling? Do you feel frail > and vulnerable? Just need to know that I'm not alone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2007 Report Share Posted December 17, 2007 You're so right Cheryl. Everyday is not a bad day, most of my days are good ones when I am able to cope very well and be productive and be there for others. I try looking on the bright side of life. My favourite quote is " Nobody has ever gone blind by looking at the bright side of life. " Thanks you all for your kind words and support. It's enormously encouraging to know that there are people out there who can truly empathize with what I'm going through Bless you all > > Hello everyone, > I'd say this is a really hot topic. I seem to have a total meltdown at > least once every couple of weeks. It comes on a day when I have had several > days of lots of back to back activity with no rest or down time. I can cry > all day on those days and when my husband gets home, I tend to unload it all > on him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2007 Report Share Posted December 17, 2007 That's the key, Margaret. Not letting negative or self-doubt derail positive thoughts. I have a copy of the movie Sea Biscuit. If you haven't seen it I highly recommend it. There's a line I like about when the horse whisperer/trainer character says about the horse that couldn't race anymore, " Don't throw a whole life away 'cause his banged up a little. He can't race anymore, but he's still good to look at. " I love this. My husband says I'm his Sea Biscuit!! > > , > > This is a big problem for me. It has a profound effect on my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 I agree with the breathing technique......so simple and easy to do, no epuiptment required! And it does help to calm you down immediately. Another thing that helps me - QUIET! I can be here all day long, with not a SOUND in the house. My hubby LOVES music and there is either music or the TV blaring almost 24/7 around here (still have 2 teens at home full time and one college student here quite often!) So when all are off to work and school, I can just be at peace, in the quiet. This helps me tremendously. Hubby always seems surprised when he comes home and it's so quiet, but I LOVE it...it's just something he doesn't understand, and that's ok.....it's my time and I cherish it as long as I can get it.........not quiet at ALL when all are home and the noise levels get almost too much to bare, sensory overload! EEK! STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Have you been evaluated for plantar fasciitis? Very painful feet first thing in the morning is a classic symptom of it. Not everything is caused by CF but it's so hard to figure out what is and what isn't! Check it out -- maybe you won't have to put up with such pain. There are stretches you can do for it. Jessie MY ankle is swelling on my left foot and the > bottoms of my feet seem to have so much pain exp. in the morning, its > like getting hit on the bottom of my feet by a hammer. Anyone else?? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Have you been evaluated for plantar fasciitis? Very painful feet first thing in the morning is a classic symptom of it. Not everything is caused by CF but it's so hard to figure out what is and what isn't! Check it out -- maybe you won't have to put up with such pain. There are stretches you can do for it. Jessie MY ankle is swelling on my left foot and the > bottoms of my feet seem to have so much pain exp. in the morning, its > like getting hit on the bottom of my feet by a hammer. Anyone else?? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 , I don't know if this is common knowledge on this board ... but the author of the book Seabiscuit has CFS. There was an amazing memoir she wrote about her experience with CFS in the New Yorker, some years ago. T. Re: Emotional fragility That's the key, Margaret. Not letting negative or self-doubt derail positive thoughts. I have a copy of the movie Sea Biscuit. If you haven't seen it I highly recommend it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 , I don't know if this is common knowledge on this board ... but the author of the book Seabiscuit has CFS. There was an amazing memoir she wrote about her experience with CFS in the New Yorker, some years ago. T. Re: Emotional fragility That's the key, Margaret. Not letting negative or self-doubt derail positive thoughts. I have a copy of the movie Sea Biscuit. If you haven't seen it I highly recommend it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 the screen play was written by a CFIDS survirvor- Hildenbrand. wrote: That's the key, Margaret. Not letting negative or self-doubt derail positive thoughts. I have a copy of the movie Sea Biscuit. If you haven't seen it I highly recommend it. There's a line I like about when the horse whisperer/trainer character says about the horse that couldn't race anymore, " Don't throw a whole life away 'cause his banged up a little. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 the screen play was written by a CFIDS survirvor- Hildenbrand. wrote: That's the key, Margaret. Not letting negative or self-doubt derail positive thoughts. I have a copy of the movie Sea Biscuit. If you haven't seen it I highly recommend it. There's a line I like about when the horse whisperer/trainer character says about the horse that couldn't race anymore, " Don't throw a whole life away 'cause his banged up a little. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 sounds like you have plantar fasciatis. Good orthotics help with that. I think that it is probably related to the fibro. Even though healthy people get it too I think that the Fibro probably makes it worse. I usually get it when I have been up on my feet too much. Diane Funny you should say that.... I am very senitive emotionally and more so in my personal life. Stress is not something I can deal with well in my personal surroundings. This weekend my bf lost the keys in the snow while snowblowing the driveway I broke down and cried after we searched for hours....We had to spend over two hundred dollars at this time of year to move the vehicle. Not to mention I could barely move when I got inside. My muscles hurt so bad all the time. I try not to focus on it as I have to stay busy so not to get depressed. BUT there are times when its crippling. MY ankle is swelling on my left foot and the bottoms of my feet seem to have so much pain exp. in the morning, its like getting hit on the bottom of my feet by a hammer. Anyone else?? > > Do some of you with CFS/ME/FBS find yourselves emotionally fragile from > time to time. Do you find yourself just worn down and not having the > energy to cope with difficult people or situations that you'd under > normal circumstances would not have trouble handling? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 sounds like you have plantar fasciatis. Good orthotics help with that. I think that it is probably related to the fibro. Even though healthy people get it too I think that the Fibro probably makes it worse. I usually get it when I have been up on my feet too much. Diane Funny you should say that.... I am very senitive emotionally and more so in my personal life. Stress is not something I can deal with well in my personal surroundings. This weekend my bf lost the keys in the snow while snowblowing the driveway I broke down and cried after we searched for hours....We had to spend over two hundred dollars at this time of year to move the vehicle. Not to mention I could barely move when I got inside. My muscles hurt so bad all the time. I try not to focus on it as I have to stay busy so not to get depressed. BUT there are times when its crippling. MY ankle is swelling on my left foot and the bottoms of my feet seem to have so much pain exp. in the morning, its like getting hit on the bottom of my feet by a hammer. Anyone else?? > > Do some of you with CFS/ME/FBS find yourselves emotionally fragile from > time to time. Do you find yourself just worn down and not having the > energy to cope with difficult people or situations that you'd under > normal circumstances would not have trouble handling? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 What attention??? That is like we are sick because we want the sympathy. What sympathy? Diane sarah_gardner_puggie wrote: I feel the same way, the more tired I get and the more I hurt the more upset and frustrated I get and the easier I tend to snap at other's espically those who make me feel like I am crazy and that nothing is really wrong or my faviorate one of all is that I just want the attention. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 What attention??? That is like we are sick because we want the sympathy. What sympathy? Diane sarah_gardner_puggie wrote: I feel the same way, the more tired I get and the more I hurt the more upset and frustrated I get and the easier I tend to snap at other's espically those who make me feel like I am crazy and that nothing is really wrong or my faviorate one of all is that I just want the attention. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 Really? I didn't know that. She wrote the book as well because the movie was based on the book. I love that movie! That's the key, Margaret. Not letting negative or self-doubt derail > positive thoughts. I have a copy of the movie Sea Biscuit. If you > haven't seen it I highly recommend it. There's a line I like about > when the horse whisperer/trainer character says about the horse that > couldn't race anymore, " Don't throw a whole life away 'cause his > banged up a little. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 Hey ! I’m so glad you have found a med that works for you! How wonderful…sometimes there is just the right combo that helps – I used to get that hip-to heel shooting pain (with the lovely butt-spazz) – it’s awful…and that same thing other places too…I did try Gabapentin (older version of Lyrica) but got too stoned at too low a dose <sigh>…more brain-whack I don’t need…but I do not think I have nearly as much pain these days as what you deal with. Last winter I sure did, but it’s not so bad this year. I’m so happy for you dear! Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Sent: Monday, December 17, 2007 10:48 AM To: CFAlliance Subject: Re: Emotional fragility >Hello Ladies, I am right there in the middle of this pile when it comes to emotions. Until this thread, I thought it was just ME. I so appreaciate those that are spilling themselves out for those of us that need it. Your timing could not be better, I might add. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 Hi Jane, yes I cannot handle a hubbub around me, but I live alone and so have much more control…but when I still had kids at home it could be hell sometimes! Not that you don’t love ‘em, but the racket can really have an impact…I just melt down and get totally confused! I do like to have music on sometimes (it’s soul food for me) but only as much and what I want! Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Jane Sent: Tuesday, December 18, 2007 5:50 AM To: CFAlliance Subject: Re: Emotional fragility I agree with the breathing technique...-...so simple and easy to do, no epuiptment required! And it does help to calm you down immediately. Another thing that helps me - QUIET! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hello All! I wanted to update my information on this thread that I posted about taking Lyrica. Although I got huge benifits from taking this medicine against the Nerve pain that nothing else seem to touch, I got a terrible allergic reaction since my posting and it went into cellulitis so quickly...it scared the pants off me! I am almost done now with antibiotics and steroids with rashes all but gone now too. It really ticks me off to finally find something that gave me hopes in getting off most of my narcodic usage to just have a severe reaction! I am not allergic to anything before this I hope everyone is hanging in there. I have been busy with my standard poodle pup until a local foundation that places dogs with people with disabilities, can get her into their prison program for beginning level training. I had no idea what this group does or will do for me but they normally place the 'right dog' with the right need of the patient. Getting trainable dogs in the specific breeds of Labs to Standard Poodles along with any combination of the two is a rare occurance. I am hoping that because I am using my own pup, it will cut out some of what would be a lengthy process. I understand or found out that they invest approx 8k in each disabled person. Before realeasing the dog back to the owner, they will install " invisible fence " , provide all items like harnesses for weight support to anything needed for the dog to do the things it's trained for. I understand that in the lowest level of training, they tech the dog how to take things from washer to dryer and out into basket, retrieve anything upon command, dial phone etc. I will be happy if she is only trained for companionship, obedience, retrival of dropped items...but anything else will be a bonus! Ooops! I got off subject and managed to write another book! God Bless Everyone! > >Hello Ladies, > > I am right there in the middle of this pile when it comes to > emotions. Until this thread, I thought it was just ME. I so > appreaciate those that are spilling themselves out for those of us > that need it. Your timing could not be better, I might add. > > My doctor started me on Lyrica (med made specifically for fibro) and > he did not want to get my hopes up and said to give it a week. > Presently, they are offering a full week free from the > pharmaciutical. I can tell you here and now, I have not taken my > percodan or my oxycontin since I took that first dose! I saw the > difference in less than the first half hour! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi , What great news about getting your pup into a training program. There is a prison training program near where I live and I hear they do a really great job. Any idea how long the waiting list is? Sorry about your allergic reaction. I hope you will be feeling well soon. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi , how good to hear from you! I am so sorry the Lyrica did not work out for you. Those allergic reactions can be scary. I would suggest now that you taper on to any new drug very gradually…that’s what I do, to avoid such scary scenarios. It’s common for us types to develop drug (and other) allergies and sensitivities as we go along. Are the narcotics so bad…do they make you ill, stoned or whatever…because sometimes they are just the best and only thing, they have their uses as well as abuses, and forget any moral judgments against your self or whatever. I know many don’t even get relief from opiates, so in a funny way you are lucky that something works for you. That all sounds wonderful about the pup! Very exciting and great that there is a program in your area. How’s the pup? Name? How old is he? Anyway my dear it’s great to get an update and I hope it all goes well for you now! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hello , My doctor and I decided together that Lyrica would not be a good idea for me to try. I'm wondering what you're speaking of when you talk about formerly taking narcotics. What was it you took and what did it do for you? At this point and for all of the past 30+ years I've had all these problems, I only take an anti-depressant at night to help me stay asleep. I have absolutely no social life because of the pain, fatigue and allergies/sensitivities to 'smells', fragrances and 'odors'. I've met a man at a singles site who is interested in meeting me and getting to know me better, but I'm 'dragging my feet' about it. On the one hand, I'd be so excited to have a real life again and perhaps even find love again, but on the other hand, I don't know if I'd have the stamina or ability to even get started. If there is anything I can do to help with my issues, I'd like to know what it might be. Thanks, Dorie Hello All! I wanted to update my information on this thread that I posted about taking Lyrica. Although I got huge benifits from taking this medicine against the Nerve pain that nothing else seem to touch, I got a terrible allergic reaction since my posting and it went into cellulitis so quickly...it scared the pants off me! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hey Dorie, I sometimes think that having relationships that are positive helps us keep going when things are really tough. Why not give this guy a chance. You won't know if you have the stamina etc unless you try, and it might be something really helpful to you emotionally and result in improved health. Maybe not, but you won't know unless you try it. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Maybe I should try wording my question another way. I'm a 61-yo woman who has had CFS for over 30 years, so having tried many relationships and all sorts of other situations before (such as employment, a social life, etc.), I know what I do and don't have regarding stamina. My question is what was it was using that seemed to help her? There was some kind of mention of a narcotic. It sounded like she was happy to be off it, but my knowing I can't have Lyrica makes me wonder if what she was formerly using might be better for me than nothing at all. Thanks, Dorie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi Dorie, well dos not get to post very often, so I will answer in general as best as I can. She was taking a narcotic painkiller for her severe pain. People with ME/CFS/Fibro have highly variable reactions and results with pain meds…some are helped by narcotic, or opioid, medications and some are not. Some are helped by Lyrica, and some are not. My suggestion is that you work with you doc on this, of get referred to a pain treatment centre. The reason is, that if you doc does not acknowledge the intensity of pain you may be experiencing, you will never get a scrip for a narcotic anyway. This is just for and about pain; narcotics will not improve your other CFS symptoms. Good Luck, Aylwin xox Quote Link to comment Share on other sites More sharing options...
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