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| VictoriaB - Oct 2nd, 2008 8:58 PM | |
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Sounds so familiar!!! If you ever get a good day or even week, you get so excited and think you will actually return to "Normal" and thn BOOM!!! I can't believe you actually working like that!! I made myself much worse the last time I went back to work. Now I am having some kind of spell where I feel like the first day of flu all week and wondered if I will have to feel better just to die, it's awful!! My heart goes out to you, I know exactly how you feel!! We have to remember today only and don't over do it, thats the main thing. Hang on-Fibro Hugs!! | |
| tnichel - Oct 4th, 2008 9:59 PM | |
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Thanks Victoria B. I"m pretty strong and it's not often that I have a meltdown. I work in the TV news business. Everyone fulfills a certain role so it's hard to have multiple days off in a row. (that and they basically fired one of my co-workers who had a chronic illness although they didn't come right out and say it.) I had just come off of working two 12 hours shifts and 3 weeks straight with just a day off each week...which is probably why I forgot to take my meds. I love this site b/c there is so much support and everyone is pretty positive in their approach to fms which helps a lot. You're the first person I've heard describe it as the beginning signs of the flu. That's how I've always described it even though I've never had the flu. At least you understand that descriptor. Have a wonderfull weekend and a Fibro Hug to you too. | |
| How to Survive - Oct 12th, 2008 7:32 PM | |
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I'm new to this site but to you tnichel and Victoria B, its so great to hear the same words used, The aching flu like feeling, the overdoing it only to be chastised by someone else who then says they have to put up with your flare-up as they walk out the door, or yourself feeling stupid that you thought you were a bit better and wanted to give something a go. That feeling that to feel better will only happen when we die. Tnichel, your strength is amazing to keep working how you do, you give me hope. Hang in there for the next ggod moment, day or week. It will happen, thats what keep me hanging in there. | |
| txsunsets - Oct 14th, 2008 1:36 PM | |
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tnichel, I know exactly how you feel. I am almost to my 1st year of diagnosis. I just went thru a flare up and missed three days of work last week and was off for the holiday yesterday. It hurt just to take a shower. I understand your frustrations. I have not completely come to terms of this illness. I get down and depressed thinking this is all i have left of my life. Keep your head up. I am here any time you want to talk. | |
| LadyRoswell - Oct 17th, 2008 12:40 PM | |
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I am truly sorry that you are sad. I know what you mean when you say flare up or I am sick and tired of being sick and tired. Not many others understand what you mean by that. They even act like they could care less because they don't really talk to you about it anymore anyway. They start to avoid you and you find you are alienating yourself from others. I know it is hard especially when you are having a flare up. I am having one and all I seem to do it move to the couch and huddle under a blanket. I am lucky though as I do still have a job and am able to work. I have to work to be able to get the insurance. I was not in an accident or anything. I also know this does not help much except to know that there is someone here that does not mind listening to you rant. | |
| Fantod - Oct 20th, 2008 6:31 PM | |
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FMS is a real b***h especially when it is paired with something else. I always stop before I do anything and think about whether I should do it all. I also consider if there is a way to break the task down into smaller increments or a simpler way to accomplish my goal. Anytime I was overextended in the past the backlash was terrible. And, it is just not worth it. I do have a professional to talk with and it is helpful. I have learned about guilt-free self preservation as opposed to meeting everyone's demands at my expense. Learning to say "no" has been a tough lesson but I've gotten better at it. I really try to respect the signals I am getting from my body. Having the wisdom to know when to stop is easier said than done. Now that I get it, my life is so much easier. I'm really sorry that you are having such a bad day. We have all been there. You are not alone in your feelings at all. Take care and let us know how you are doing. | |
| tnichel - Oct 22nd, 2008 6:36 PM | |
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I don't know what to say other than thanks. I appreciate everyone's kind words and stories I can relate to. Lady Roswell, I am still trying to deal with the fact that several friends have disappeared or now avoid me. That's a hard thing to deal with but God blesses you in other ways. The friends that are still around care and listen and that's the best gift a friend can give. And this website makes it easier to deal with caring people like you all. As has already been staying the average person can empathize but will never truly understand what we go through. It's amazing that even a year after your diagnosis you still don't know your limitations and other symptoms suddenly pop up. So I understand exactly where you are txsunsets. Still, I am blessed that i can stil work. Many are not as fortunate. Thanks again for all the kinds words and advice. I hope I can return the favor sometime. So be well (at least what is well for you) And don't forget to smile and count the blessing in your life even when things appear bleak. And don't forget about your support system on this site. ;) | |
| Barbieflausa - Oct 31st, 2008 12:46 PM | |
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You are not alone. I am having another bought...this time its my digestive track. However, I stumbled upon 'sesame oil' and it has worked wonders. I now take a little bottle everywhere I go. I use it in my salads, on my joints...and it seems to do wonders. I even put a few drops in my tea and in my hot shower in the morning. | |
| lmj0720 - Nov 9th, 2008 7:07 AM | |
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hi there i just found out i have fibromyalgia i have had this for quite soem time and they have did every test uder the sun on me finally i went to this doctor for the pain on my left side arm hip and he is the one that sent me to a doctor that deals with patients with fioromyalgia i was so fustrated that no one could help and then dr estes came along. it is still a struggle you are the first person iam talking to about this because i feel the same way there are days i fill like i have no control of my body iam tired i have lts of pain and i try and deal with it but it gets very frustrating. i take alot of pills for the pain i hate taking meds so i want to find a natural way to cope with this. i feel just like you do sick and tired of being tired and in pain all the time if i over due any thing i pay for it all week i have a very high stressed job do you do any kind of meditation i have heared this helps along with excersise i try yoga but i have a lot of pain afterwards. i guess we have to set a postive frame of mind and learn to deal with it. that would be the first step. i just dont wnat to be stuck taking meds all my life i feel like this fibr has taken my life and i want it back thanks for listening hope to here back from you. i did talk with a therpist it helps some dddto be able to talk to someone that understands you and your problem some people dont believe in fibro and sa its all in your head if only they new what we are going through.hope to here back frome you | |
| belong2 - Nov 12th, 2008 10:30 AM | |
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I know exactly where you are. The past few days had been so good, I felt normal, if that even exists. I felt like I could continue my normal life again. Then today, achy and depressed and sad and so so tired. | |
| Sway - Nov 13th, 2008 5:01 PM | |
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Hi there, | |
| tnichel - Nov 14th, 2008 5:31 PM | |
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Hi lmj0270. Thank you for opening up and sharing with us how you are feeling. No one should have to suffer thru this alone. Especially since you were recently diagnosed. It hasn't been mentioned in this post but has on several threads on this forum. People talk about a circle of emotions with 5 stages. First happy that you're not crazy or a hypochondriac, to denial, depression, anger...then it starts all over again. I'm sure I missed a few stages but someone else will probably reply to this (darn my memory banks). But my point is it's a never-ending battle. You must know that you will go thru these stages so you can roll with it. This sight is excellent for support and information. It's not about a bunch of people complaining about what they have to deal with in life. That's why I like to come here. Everyone is positive, sympathetic and can relate. So remember that and come here, at least until you can build your own support system of friends and family. Some won't offer much support. It's something you'll learn accept in time. As far as meditation, no I do not do that. I've tried several times but it isn't for me. When I feel my anxiety rising I try to find a quiet spot and practice taking long, deep breathes. (well, I guess that could be a form of meditation) Sometimes it works and sometimes it doesn't. Exercising is also good for relieving stress and anxiety. Even if you can't do a full workout, you can do stretches or yoga to loosen up those muscles and rejuvinate you mentally. The key is to take it slow. If your muscles start hurting during stretching, then you are over-exerting your muscles. It's also important to know working out will cause more pain in the beginning and will gradually fall off so stick with it. And like you, I hate to take meds and got quite depressed when I learned I'd be tied to a little white pill for life. It's a lot to deal with. Good move talking to a therapist. I think I may give it a try. It's not that my family doesn't support me but they really don't understand how bad life really can be with fibro. Give your meds time to work. The longer you are on them, and the more sleep and healthy approaches you adopt, the sooner you will have some semblance of what's normal for fibros. It just takes time. I didn't get that at first. I was in pain so long I wanted immediate relief. I was near a nervous break down when I first came to this site. I've come a long way..but like my original post...you just have those days where things come to a head and you feel like breaking down. I try not to fight it and let myself go thru the motions b/c I know it will get better. It's just a bad day made worse by this condition. One thing no one will ever be able to take from us is our resilience. I think fibros by nature are strong, determined people. That's proven by the sheer number of us who worked and continued our routine for years before being diagnosed. I read somewhere it takes an average of 7 years to get a diagnosis. So we are fighters and even on our worst days we'll never give up. I hope all of this has help. Sway, that's a great way to put it into words. I totally understand the wanting to give up after three or four days. And looking healthy doesn't gain you more sympathy on those really bad days. I think that's the hardest part to deal with...appearing healthy on the outside and crying out in pain on the inside. I often get comments from people while out running errands like "don't look so mad" or "smile, it's not that bad". Well yest it is and no I'm not mad. I feel miserable and want to climb in bed for a good 3 days but I can't b/c I have responsibilities. That is very frustrating. Ok, if you guys can't tell I'm a writer. I'm going to cut this short b/c nobody wants to read a book. But again, I thank everyone for all the replies and support. And hopefully my story and yours will be of help to newbies coming to this site. Fibro hugs everyone. | |
| cannotaccept - Nov 18th, 2008 1:11 AM | |
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HI All, | |
| reychel - Dec 3rd, 2008 8:28 AM | |
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I was just thinking about this yesterday. We - peolpe with Fibro - have to live day by they never trusting the next say wll be better! | |
| llcsmom - Dec 3rd, 2008 10:32 AM | |
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One of the challenging issues for me, the mom, is to know when my 12yo daughter is having a bad day or is in the middle of a flare, snd me--trying not to get stressed out about how much school she is missing. (She does have some accomodations at school at least, but there still is that "pressure" to be at school as much as possible.) Sometimes her teachers (who are aware of her fibro) say some things that are irritating. | |
| SusieQ - Dec 3rd, 2008 4:41 PM | |
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Hi! I'm new to this group as I just found out last week that I probably have fibro. Since Sept my symptoms of fatigue and then pain have increased. I got to the point in November where I was home most of the time in tears from pain. I finally went to my dr. and since my bloodtests show nothing else she feels this is what it is. My shoulders hurt so bad I feel like someone took a baseball bat to them. All down the backs and fronts of my legs, my lower back, hands, the list goes on. Some days I just have this paralyzing fatigue where all I can do is go to bed. I make sure I walk my dogs every day but some days it's all I can do to get dressed and get in the car. I see a rheumatologist in January to see what he thinks. I saw on Oct 2nd Victoria posted how she feels like it's the first day of the flu. I have that feeling sometimes too when I'm getting tired. Knowing what is too much is so confusing as it varies by day. I do feel depressed some days and very sorry for myself along with those around me. My husband is awesome but I don't know if he can take a lifetime of this. Like most of you I am or was a very active person. Lots of sports, friends, social outings and full of life. I feel like I've been kicked in the stomach. When I go to the pool for my masters swim class there are days I can't lift my arms to do the front crawl. I try to congratulate myself for being there but want to cry as I nearly drown leaving the shallow end. Do you have any words of advice? What meds/vitamins are you taking? What exercise? Help, I'm lost and scared! | |
| sandik5 - Dec 3rd, 2008 9:32 PM | |
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Are you taking anything for depression? I $have been for some time now and it has helped a lot. | |
| Fantod - Dec 3rd, 2008 9:44 PM | |
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Hello SusieQ - Welcome to the group. There is a lot of good information on this site. Take some time to read all of the information on the lefthand side of this page. I'd also go through some of the posts. Fibromyalgia (FMS) is poorly understoond by the medical profession and the people who have it. FMS is basically a short circuit of the central nervous sytem that causes the pain receptors to be stuck in the on position. It can be caused by stress, a trauma of some sort or a combination of factors. Some people are apparently more suceptible than others but the mechanism is poorly understood. You are lucky that your doctor even thought that it might be FMS and recommended that you see a rheumotologist. Even though FMS is recognized by the National Arthitis Foundation, many doctors including rheumotologists will not acknowledge its exsistence. To find a fibro-friendly rheumy in your area you can go to the National Fibromyalgia Association website and ask them for a referral. OTC medication is not effective for FMS. Only certain classes of drugs are used and they must be prescribed. Usually they are anti depressants such as Cymbalta or Lyrica in low doses. Part of the reason you are having such a high degree of pain is that your muscles are not getting proper rest. FMS also disrupts the sleep cycle. Amitriptyline is prescibed to help with the sleep issues. It does take time and a lot of messing about to find the right combination and doseage of medication for each person. In my opinion, there is no reason why your doctor could not prescribe any one of these drugs for you while you wait to see the rheumy. Personally, I'd be very agressive about getting in to see the rheumotologist even if it meant calling every single day to get a cancellation. You might also consider a pain specialist in addition to the rheumotologist. You could find one by calling your local hospital physician referral service. FMS is not the end of the world but it does require readjusting your expectations. Once some of your issues are under control, you'll have a better perspective. I will say that you will have to do less, rest more and respect what your body is telling you. Tasks will have to be broken down into smaller increments, done differently or sometimes not at all. I have some complex health issues in addition to FMS. I am unable to work. I am often housebound because of my medical problems. I have found new interests to take the place of the things I am unable to do. It took me a long time to stop beating my head against the wall over all of my health problems. Now that I have, I feel quite liberated. I think it is very important to be an educated consumer when it comes to managing FMS. There are still too mnay health care professionals out there that would rather mismanage a patient than acknowledge FMS. I wish you the very best and hope that some of comments are helpful to you. If you have any other questions, we will all try to help. Take care. | |
| VictoriaB - Dec 3rd, 2008 11:22 PM | |
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Hi susieq and welcome, | |
| txsunsets - Dec 5th, 2008 5:51 PM | |
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tnichel, I know exactly how you feel. I was diagnosed back in Jan. Although there isn't a cure for FMS I always pray they will find a better way to treat FMS so I am able to live a normal life again. Knowing your limitations is hard when you are used to doing everything yourself. I am like you, when I have a good day I tend to do everything like I use to do. I also live on the second floor and have to climb stairs, however, i have some really great kids that understands that I can't carry the groceries in any more and they met me at my car to help. I wish you luck. Fibro Hugs | |
| from-fibro-2-college - Dec 6th, 2008 12:05 AM | |
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tnichel, my heart goes out to you. I have felt exactly the way you do as a result of the fibro. I was diagnosed one year ago October. I do have good days, but not as many bad ones. The lyrica I take helps only partly. Like you, I don't think anything will completely take the pain away other than God of course. My faith in Him is what keeps me going. Well, that and my determination not to let this illness rule my life. I was also diagnosed in 01 with avascular necrosis resulting in 2 total hip replacements. Both done before I was 40. That's a huge slap in the face. I know this may sound vain, but the one thing that bothers me so much is the fact that I will never have that sexy walk again. I now have a slight limp when the north wind blows. Arthritis they tell me. Along with the fibro, this has taken me to a seriously low place. Depression and chronic pain go hand in hand. By God's grace I have found a wonderful doctor who understands my illness and has worked with me in regards to a depression medication that works well for me. Elavil is what I take, one at bed time, and a mild sleeping pill if needed as well. These help me rest better at night which in turn relieves some of the fatigueness brought on by fibro. Please don't feel so isolated. There are many who experience the same things you do. You're not alone!! I will keep you in my prayers. God bless! | |
| kristina622 - Dec 6th, 2008 11:38 AM | |
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wow that phrase "i'm sick and tired of being sick and tired" is what i've been saying for 2 years. I don't see a therapist, but I have a really good friend that listens and it helps a lot. I wanted to go to an actual therapist but now i don't have insurance. i think talking to someone is important, don't ever keep anything in. i usually hold on to my anger and it comes back to bite me. i also think it helps talking to people in the same boat as you. we're here for you! | |
| SusieQ - Dec 16th, 2008 10:44 AM | |
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Oddly enough I started to ween myself off an anti-depressant in Sept. Eltroxin 37.5. I had a challenging year prior and needed some help. As I weened myself off of this the symptoms became more prevalent hitting an all time high in November when I was completely off of it. My dr. said I could go back on it but I see the rheumatologist Jan 6 and am afraid to mask the symptoms. | |
| SusieQ - Dec 16th, 2008 10:52 AM | |
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She gave me Naprelan, 1000 mg a day as my sedimentation rate was slightly inflated. She said to try this and if it didn't work I could go back on my anti-depressants as I had coincidentally weened myself off of Effexor 37.5 starting in Sept. The symptoms became more prevalent the less I took. I'm afraid though that if I go back on it the rheumy will tell me again that I don't have FMS. I went just over a year ago to him and asked about it. He said No. I was just starting the anti-dep. at that time and my symptoms (albeit mild) abated. | |
| Taleese - Dec 16th, 2008 5:58 PM | |
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SusieQ, | |
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