# First time visit



## Guest (Jul 6, 2000)

I am new at all this, I have been diagnosed with FMS about a year ago and after visiting this site decided to give this a try. It took me along time to go to a doctor, I thought I had MS or something. The pain got to be to unbearable and I was not able to even keep my days straight from not sleeping that I went and was diagnosed with FMS. I ended up leaving work and started acquatic therapy and differnt meds. I am on a varitey of medication right now and find that they are not giving me the comfort level they use to. I have gotten frustrated with myself and keep making myself work through this. I exercise, painfully, but I use to be a very active person and have always been faithful to exercising. It is my therapy for everything. Well for the past year or so it has been a struggle. I have a supportive husband, he is always searching with me for answers. We just started with the Vitamin B complex and Magnesium combo and I have to say that I have more energy through the day. The meds I take really bother my stomach and I don't feel like eating. I just went back to the doctors and wanted to see about different treatments that I can check into and I was very dissappointed, I was told that I was having a flare up and to cut back on work and rest and it will calm down. This isn't a flare up, I can tell the difference. My current treatment of meds are not working. I have not felt like this for awhile - frustrated and feeling doomed. I don't feel alone, I just don't feel in charge. My husband and I have for the past 6 months working on changing our eating habits. We eat very well balanced meals concentrating on protien and carbs. We keep the fats down also. Protien is the hardest for me to get enough of. The one thing that plagues me the most other than the pain is not being able to finish a sentence sometimes. this is tough when I am on the phone all day with clients and I find that I can't remember one day to the next. Challenging, I have to write everything down. Do any of you have it bad? I think that this is the hardest part of this is not being able to keep my head functioning. It is bad enough to have the fatigue and pain but why is my head not attached?


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## Mio (Dec 19, 1999)

Hi lexa,and welcome! I know how you feel, this is tough! Iï¿½m having a pretty bad time now and besides the pain, I cant concentrate on anything! Iï¿½m a librarian and I use to read a lot, but now I cant focus on anything. I got my diagnose this Spring and I have a hard time accepting this. I know this is a chronic disease but still Iï¿½m hoping this will go away next week or so! I know this is not logical and itï¿½s stupid, but as I said, itï¿½s so hard to accept the fact that I always will be in pain 24 hrs for the rest of my life. I was thinking about what you said about exercise...I think its good to do some exercise (like aquatic therapy) but I really think you should not push yourself if itï¿½s painful! My MD told me to take walks, aquatic therapy, Yoga, Qi Gong and so on. It will get worse if you exercise to hard. What kind of medication do you take? I found out that pain killers dont help much, some people get relief from taking a small dose of anti-depressives. Have you checked for defiency of folic acid and vitamin B12? It seems that a lot of FMS patients have defiency of these vitamins, ( I do) and some people get better taking shots and pills. Take care, Mio


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## Guest (Jul 6, 2000)

Lexa,Welcome to the forum. I am relatively new here myself. (See post: First Post..Hi from Calida)Golly, I wish I had the answers to all your questions. (Heck, I wish I had an answer to ONE of them!) I think most of us deal with this forgetfulness in varying degrees. I can be talking and just stop in mid-sentence, completely forgetting my train of thought. It doesn't happen to me very often but it does happen. More often I'll be talking or writing and trying to think of a word...a word that I know and have used all my life....simply can't recall it!I'd say you are fortunate in that you do exercise and like to do it. Sedentery, bookworm types such as myself have always had an awful time getting off our fat rumps and MOVING! And, of course, that is not healthy either.You do not say what meds you are on but I think it's a foregone conclusion that whatever you are taking on a regular basis, eventually loses its "zing" and one is forced to try something else. Until that bombs. I know these drugs help people but I am just loathe to get on any of them on a regular basis. Sometimes it seems the cure is worse than the disease. In my lifetime I've taken amytriptyline (Elavil), Triavil, Ativan (lorazepam). Many things for depression and anxiety. Right now, I take 0.5 mg of lorazepam for feelings of anxiety or impending panic though only PRN, not on a regular basis. I tried taking the 0.5 mg three times a day but found that they, themselves, even at that low dosage for me cause depression. The chronic pain and fatigue is something I've acquired within the last two years. The latest pain relief in my "arsenal" is Celebrex. It's an arthritis med but it did help me and within 12 hours time. I would not be surprised if I had some arthritis too. It would be unusual at 62 years old not to have it. But I've even stopped taking the 200 mg of Celebrex every night as I did in the beginning. Many people complain of this med upsetting their stomachs. I am bothered with irritable bowel syndrome symptoms at times but not nearly as bad as some of the folks here.You mention diet and concentrating on protein and carbohydrates. There is the feeling among sufferers of FMS, CFS, and other autoimmune syndromes that a quite drastic reduction in carbohydrates and simple sugars is beneficial. A couple of books on this diet regime (for weight loss) are "The Zone Diet" by Dr. Barry Sears. The other is "Protein Power" by Michael and Mary Eades. (They are both MD's) There is lots of info on these diets on the Internet and more than a few success stories on personal websites. I personally believe that the guidelines for a diet high in carbos is not for everybody. I think some of us are much more sensitive to them than is the general population.I've rambled on long enough. My best wishes to you in finding meds that work for you. Keep reading the posts and keep posting. Together, we know a lot more than any one of us knows.







calida


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## Guest (Jul 6, 2000)

Milo, thanks for the feed back! I used to read a lot, but I have no desire anymore. Are you still working? I know how you feel that it will go away, I don't want to be like this for the rest of my life. I am in denial maybe? I am on two anti depressants, Desyrel, Paxil. I take take 400mg of Celebrex a day and have just added a muscle relaxer for during the day. Which I can't take and drive, go to work etc.. When I exercise it is not intense exercise. I have been exercising all my life so I have had to learn to modify the workout. I do a lot of stretching and water exercises. I walk a lot and I have a stationary bike. I use a lot of resestance equipment in the pool to keep the muscle tone and strength. Very slowly and carefully I work out. I have had all my blood work done in Feb. and it is perfect except my white blood cells were a little low. The last time I went to the Dr. I asked about V-B12 shots and she said that my level was great. I decided to take them orally and it helps a lot. Do you know what causes the forgetfulnes and ability to concentrate? Thank you for your reply, this will help keep me going.


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## Guest (Jul 6, 2000)

Calida - Nice to meet you! So you are not on anything full time for pain management? Just when you need them? I have forgotten to take my meds for a couple of days and I thought that I was going to die ( I wanted to anyway). I had a long rebound period. I have always been on the go constantly so this is like hitting a brick wall for me. I have to say though that even at my worst I have a niece with Retts Syndrome and I know that my life is still blessed. I keep telling myself that it could always be worse. This board is wonderful, I have not really talked to anyone about this, at work they tell me that I don't look as bad as I say it is. So I just don't talk about it. Do you have friends and family that understand what you go through? I think that is the key to any ones strength in life. You take care, and reading a book is a healthy way to keep your mind active!


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## moldie (Sep 25, 1999)

Welcome lexa, Looks like you and calida posted around the same time. I agree with trying to take alot of the carbs out - especially those with white flour and sugars. I think they tend to slow a body and a mind down. It may be my imagination, but I think protein first thing in the morning is helpful. I am not sure what exactly causes the mind thing, but I know that there has been noted an area of the brain of fibro patients that is highlighted different from "normal" brains. Perhaps it has something to do with the synapsis/sending and receiving of messages. Making notes seems to be the best thing to do, as well as keeping the mind active, but shutting it down in a quiet darkened room when you need to (great when the "fog" rolls in) can be very helpful in rejuvinating it and your sore body.I am glad you are easing off a little on the exercise but not stopping. It sounds like you have a good program as long as you quit when you experience increased fatigue or you begin to feel more muscle pain. I usually go only slightly beyond the burn and then call it. I actually think if you feel sore and fatigued, for example in the a.m. after your body has been stagnant all night, it is a clue that you need to get your muscles and circulation going (and possibly increase the oxygen blood flow to the brain while your at it). Warm moist heat, trigger point, and massage seem to be about the best therapy for me. (Just wish I could get a little more of that massage on a regular basis).







It is great to be able to get these therapies before and after your work-outs.It is also important to get your deep sleep at night to allow your muscles to completely relax and I would guess it refreshes the brain too (at least it makes you more alert the next day). I use Benadryl or its generic equivalent. There seems to be a lot of different types of meds that people benefit from for this.Glad to have you aboard lex, and hope you find the support and even some suggestions helpful for you.


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## weener (Aug 15, 2000)

Hi Lexa:Let me begin by welcoming you to our family. We understand what you are going through. I know how frustrating it can be, when you look fine on the outside, but are hurting on the inside. The best way I describe it to people is like having the flu (all the time). I find that over past 14 years, I do have good days. My energy level comes and goes. The pain has become more manageable. Ocassionally I will have a severe bout where I can barely get out of bed. That's when I know I have to rest. Keeping active with walking, yoga and water activities is a good idea. Since starting my yoga I have found that the pain doesn't seem as intense and it doesn't stay around as long. I know a lot of gals on this board take B12 shots and MSM and low carb diets. Flexeril is my med of choice. It seems to be the only thing to help me when the fm gets bad. The flexeril makes me quite dopey. I'm still able to function, but would not dare drive. The other thing I found hard to accept is not having control of what was happening to me. In time, I started to take control again ie)trying new things to make me feel better. Things will get better Lexa, don't give up. I think you will learn to monitor your daily activities, know when it is time to stop and rest. Brain fog was another frustrating thing for me. Now, I just laugh it off (I just tell people that I'm having a foggy brain day). I make lists for everything and sometimes forget the lists at home. Please remember that we are here for you, so feel free to vent. We also have chatnites on Monday evenings. Please join us when you can. Take care.


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## Guest (Jul 6, 2000)

Welcome Lexa - you are at the right place. I think all of us have experienced those wonderful freinds, colleagues, etc. who point out that we look so good for being in so much pain, etc. While none of us would wish this on our worst enemy I find it hard not to imagine how they would react to just a couple of days in my skin. Perhaps they would be a little kinder with more empathy? Anyway, we understand each other and know how hard we work at making it. As for the brain fog - it sucks big time - I am right in the middle of a good case of it right now. Every other word I have typed I have had to go back over once or twice, or more to fix as I am not spelling or typing well. Feel free to vent here and read everyones different posts - they are therapuetic all by themselves. Stacey


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## Guest (Jul 6, 2000)

Welcome again Lexa,Alot of people are very ignorant to our disease but I blame the medical profession for this...there are many doctors that still beleive it's all in our heads.Well please believe me when I tell you that this is a true disease and we are unfortunate to be the guinea pigs for the medical community...I can freely say this as I am an RN and also worked with people that looked at me as though I was a hypocondriac. Very few people offered to float for me to the heavy medical floors--I worked on OB/GYN. I finally had to give up my hospital career and had to seek other employment.Just remember people can be mean but you have found a place to vent where we don't judge you and you can complain until your heart is content.Your not alone in this world of FM. We all are very similar and share alot of the same problems so join in...it's the best thing you can do for your soul!!Sea


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## Guest (Jul 6, 2000)

You all are wonderful! Moldie, Weener, Scaracter and SEA (is that because you are in SEAttle?) I know most of the three letter codes for the airlines







I just had to change over to a new insurance which is very frustrating. I just started having a long term history with a doctor and now I have to find another one. This is so hard for me, I don't trust doctors. I have had some that look at me like I need therapy, that I am just unhappy and that there is something that is plaguing me mentally. But, with the new insurance comes better coverage and I can get back into PT and messages. I agree with the Moist Heat and Messages. I wake up at times in the middle of the night and heat a moist towel in microwave, I don't like to take extra medication because I have chemical sensitivity and I don't want to have to look for a different combination of meds. It took me over 3 months to find the right combination and I was a zombie all the time. It frightens me, I also have been told that I have two heart valves that leak. SEA - do you know anything about that? I went to a cardo specialist and they told me to have it checked every year but I am not on medication. Also, does anyone expierience jerking spasms in your leg or arms? I have those a lot when I am trying to settle down for the night. This bothers me a lot. Should I be telling the doctor or is this some what normal for Fibro? I hope to one day be able to offer some good sound advice for others, but know that I am here for all of you too! Thanks to all the new friends I have...


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## Guest (Jul 7, 2000)

Hi Lexa,SEA is my initials and it so happens I live in the Cape Cod area. As far as a leaky heart valve is concerned it depends on what the defect is and if you have any concerns seek out a second opinion. Do you have any cardiac symptoms?The only time I experience jerking motions is when I am about to fall asleep--in my arms but other than that I do not.tell your doctor about it--it is better to be safe than sorry. It is very difficult when you have FM because alot of doctors will attribute all your symptoms to FM. Don't get me wrong alot of your symptoms are in indeed related to the FM but it is important to share your concerns with a doctor who know and believes in FM.Hope you will feel better soon-or at least have a "good" day.Sea


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## Guest (Jul 7, 2000)

Hey, so many new names--this is so great to have everyone! When I started this board over a year ago, it was very stagnant, huh Moldie? Lexa, could you possibly be having restless leg syndrome? I have heard that jerking of the arms and legs are the symptoms. I'm not sure but I think that is what I remember. Yes, you need to let your doctor know about that,okay?I am still suffering from weird finger and feet sensations. It was really bad today. It's not they are really cold but if I put them under my legs, they start to feel a little better. I put some moist heat on my back and relaxed this afternoon and unbelievably, I felt better all over. My joints on fingers are also starting to hurt which they never have before. I hate it when I get a new symptom. And they say it is not progressive......Hmfp!Welcome to all these great new people. Hope you have a great weekend. Lynne


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## Guest (Jul 7, 2000)

Hi Lexa! Welcome with ((((hugs)))). I have been so busy since the chat Monday night that I haven't been in to check the board. I'm fairly new here myself, and let me say that when I first came here a week ago I was so down but these wonderful supportive people have helped turn me around. Physically I still feel like #### but it did my heart the world of good. My husband is supportive too, and as great as he is, I know that deep down he can never really know how this feels. Every case is different, thats the problem, what works for one won't work for another.When I was diagnosed in 92-93 I started with a low dose of elavil, it took several weeks to get use to it, but after I did, I was so much better I could almost forget I had FM, I still had flare ups but they were nothing compared to before. But the last year+, the elavil hasn't worked as well, going from 10mg a day to 50-100mg. The increase felt like it was burning a hole in the pit of my stomach, and still it didn't help, so they put me on celebrex, I got almost immediate relief for my joint pain, but the rest.....well it didn't do much, then the meds were really tearing at my stomach, I couldn't eat at all and dropped 10 pounds in a week, so Pantoloc was added, I found that licorice root powder capsules gave my stomach more relief than Divol. In my medicine cabinate is a pile of things that don't work for me, and a pile that do work, but I can't take them all everyday. Though I would never recommend it to anyone, I have played around with my meds so I could find a way to manage. The celebrex gives me terrible headaches so I take it every other day, got relief from that problem, Pantoloc not only helped get rid of the burning feeling in my stomach it has also helped tremendously with the IBS. My doc gave me permission to play around with the elavil, up to 150mg a day if I need to, I try never to take that much unless I'm really desperate, when all else fails I have a bottle of Talwin for pain. When I first started with FM advil was a huge help, but I can't take it now because of the stomach problems. I have tried alternative medicine, accupressure (it helps a little) willow bark tea, valarien (Smells terrible) st Johns Wart etc etc, but as my stomach problems increased I could no longer tolerate them. I use a pinch of ginger in tea when I feel sick to my stomach and it works wonders (Gravol doesn't mix well with anti-depressents) But you shouldn't take any herbs or natural treatments without talking to your pharmisist (they know more about meds than the doctors) For example-I was told that taking high levels of potassium with elavil can cause coma or even death, so I have to be careful about that.I hate the confusion too, I feel like I'm living in a haze all the time, I make notes to myself, but then I can't find the notes. I have to change the colors of the notes, I ask my kids to keep notes and remind about important things, as each week goes by my spelling gets worse and I look at common words and they look like a foriegn language. I'm self employed, when I was doing well my sales were about $69,000 a year, but as I got worse my sales have dropped to about $15,000 and yet it seems that I have to work twice as hard as before.In the not too distant future I will have to give it up.The only thing I can say I have really learned in the past 8 years is that you have to arm yourself with as much info as possible and take charge over your meds and your care, sometimes just feeling like we have some control makes it easier. Don't do things without talking to your doc first, but if he/she isn't supportive and helpful, look for another doc. (I intensly hated it when my doctor would shrug and say, "its a flare up" - thats not terribly helpful when when you are in agony.)One of the things that people often say here is about lookig good/healthy on the outside. I must admit that was the one thing that surprised me, because I don't look well, I'm pale with circles under my eyes, my lips are often bluish, I often have huge unexplained bruises, and people often comment that I don't look well. I have another symptom, blistering hands, blisters in my eyes that make them swell up. I wonder if it has to do with the length of time you have it? Even though the books say it isn't a progressive disease, I just can't buy that. My mom & sister have had it for years. Mom was a huge exercise junkie, a yoga instructor etc. the problem was that she kept exercising thinking the pain was due to the FM when in fact she was damaging her spine and now she is lucky she can still walk. So I have to agree, don't force yourself to exercise through intense pain, you could be doing more harm than good. One of the problems with FM is that since we already suffer so much its hard to know when we have a different problem. So I have babbled long enough, sorry to go on so much. I hope you keep coming back, its so much easier to cope together than alone.Lori Ann


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## Guest (Jul 7, 2000)

I agree, I have had 3 surgeries this year for the first time in my life.First time because all my tooth fillings fell out, second because right knee cartledge became torn , then 6 weeks ago had major facial surgery on my ears, nose and sinuses. But each time it tooks months to get to a surgeon because docters kept saying it was probably another Fm sympton, thick i MIGHT BE, STUPID i'M NOT.However having said that since I am sore all over all the time it can be hard to pinpoint the why and where about extra pain to the docs. I might just add that I am now totally sick of docs saying you will get over the surgery ok - because I don't!!! It takes me months to get back to just living again. Let alone think I am going to live. The post op pain has each time been absolutley the worst.I guess it is just the getting to know your own body. I always wanted to do marathons, swim meets etc as I got olderwhen the kids left home , but at 49 I do aqua therapy and then go home to rest. So I guess that's the way it's to be.As for it FM not be progressive I don't beleive that at all.The hard part for us the victims is getting our heads around that idea, and I think it can take a couple of years to come to terms with it all.I did a little gardening 3 days ago and have suffered ever since - sore bock and shoulder muscles. Also after all these years -10- I still forget and on a good day do those sort of things and then pay for it the next day and the next, fun hey.ok fingers hurt so will close now.


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## moldie (Sep 25, 1999)

Hi lexa, and yes it is wonderful to see so many more posters here now Lynne. The more input the better!Have you tried a Calcium and Magnesium combo lexa? It may be helpful to take this at night about an hour before retiring with a small amount of food and water flush. This is something that has been found to improve twitching/spasm problems (especially in the legs) and perhaps improve sleep in the process.


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## Guest (Jul 11, 2000)

Moldie,I am currently taking magn. and calcium at pretty high doses, the DR. said it may take about a month for it to really show some difference. It has helped, I feel like it is settling down somewhat. I also have started taking a V-B Complex and it is helping with my energ level during the day. I am not having a good day, I am in alot of pain in my shoulders, jaw and back. It is the burning sensation that feels like someone is dragging a surrated knife down my back. I work from home tomorrow so I hope to get a handle on it.


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