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    Old 04-01-2005, 07:23 AM   #1
    Bothrops
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    Just diagnosed with CFS/Fibro. Need your help

    Hey everyone, I was diagnosed about a month ago with CFS/Fibromyalgia. I have not worked for two years due to complete exhaustion, spacy/brainfog and lightheadedness. I have many more symptoms but these 3 have been with me 24/7 since the start. The start was three flu-like illnesses in a three week period. My bloodwork resulted in a +ana, chronic epstein barr and cytomegalovirus. I have some ?ís:

    1) Does anyone with CFS/Fibro get better?

    2) I have read several books on this disease a lot of them speak about homeopathic remedies such as magnesium, DHEA, and acidophilus. Do these work.

    3) I have been on Elavil 25mg a day for a week and it has not helped with my sleep, depression or pain. Is 25mg the right dose for a 170 pd. man? How long does it take to work? Is this drug going to screw up any of my vital organs?

    4)Why is it on days that I feel real bad I pee so much? Is this common in CFS/Fibro?

    5) Why do the joints and muscles in my legs hurt so bad yet they cant find anything wrong?

    6) Why does my back. from the center up to my shoulders, burn and sweat frequently? Does this happen to anyone else.

    7) Is there any way to get rid of this spacy/brainfog? This is the worst feeling I feel like I am dead or in a dream. It is like nothing is real. Do any of you feel this 24/7.

    I could ask a thousand questions but if I keep going no one will respond. If anyone could answer one question I would be pleased.

    Sincerely Derek

     
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    Old 04-01-2005, 08:22 AM   #2
    pa235
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    Re: Just diagnosed with CFS/Fibro. Need your help

    Hi Derek,

    Oh the brain fog, it is terrible, I hate it. I have to recheck everything I do, did I turn the stove off, if I go shopping I check over and over to make sure I have my wallet. I always say it is like a cheap drunk and I do not drink. I get a lot of burning pain at diffferent areas in my body including the upper back and shoulder blades, my chiro told me that is from the spasms rubbing against the nerves.

    There are a lot of people on this board who know a lot more than me about what causes what with this dd, they will answering you.

    I have Fm for 21 years and I did take magnisium for about 5, saw no difference but others get help with it, we are all different in what helps.

    Welcome aboard, Linda
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    Old 04-01-2005, 09:07 AM   #3
    kbak
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    Re: Just diagnosed with CFS/Fibro. Need your help

    Derek,
    Your lucky, you have a good dx, many people go on forever without knowing what's happening. There are a couple of drugs that might serve you better. I have CFS/fibro also. My fibro doc put me on Gabitril for sleep. This drug helps you get into a deep restorative sleep. It doesn't help you get to sleep, but once you get to sleep, it helps you get a good sleep. I use a nytol to get to sleep then the drug kicks in, and I really get wonderful results with it. The other is Neurontin. It's a drug for nerve pain. It works marvelous. Yes, the homeopathic remedies are a good adjunct. Something you might want to try is NT factor. My doc told me that when you have this condition the mitochondrial gets warped and doesn't function well, which contributes to your being tired. NT funtion is suppose to help fix that. The overactive bladder is common with CFS. not sure why. Leg pain is restless leg syndrome. I found the nerve pain med to work well on that. You can do a web search on all these indivigual concerns and find lots of info. Yep, I have back and shoulder pain. As to why, it goes back to the underlying causes of our illness. My brain fog is terrible and keeps me from working too. In fact when I type, I have to constantly go back and retype words because I type them backwords. I can't remember anything that's a noun. I constantly lose things, and have no idea when they are! I could type pages on my brainfog alone. I just started treatment with a fibro specialist, and I'm waiting for my bloodwork to come back. The clinic I'm going to does tradtional and alternative med treatment. My doc did say they treat epstein-barr with collidial siliver. Has your doc said how their going to treat your epstein-barr and other problems? It just pays to do a lot of research. I hope you find comfort in the fact that your not alone. There's to many of us out there. It's very hard because the average person doesn't understand this, and how can they really. Glad your here! Take care.

     
    Old 04-01-2005, 11:38 AM   #4
    GodsGirl4ever06
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    Re: Just diagnosed with CFS/Fibro. Need your help

    Well, I can answer SOME of them..maybe not well, but here you go anyway, I hope it helps at all:


    1) Does anyone with CFS/Fibro get better? There are periods of remission, but I don't know how frequent that is or if it lasts forever.

    4)Why is it on days that I feel real bad I pee so much? Is this common in CFS/Fibro? I do too! And it's especially annoying at school. My teachers have limited passes to give out every semester and I think I've gone over the amount in all my classes! And I pee between almost every class some days. It's really crazy. So, yeah...I do too.

    5) Why do the joints and muscles in my legs hurt so bad yet they cant find anything wrong? Well, I don't know how to answer that except to say, me too.

    6) Why does my back. from the center up to my shoulders, burn and sweat frequently? Does this happen to anyone else. Don't know WHY but yes, this happens to me too.

    7) Is there any way to get rid of this spacy/brainfog? This is the worst feeling I feel like I am dead or in a dream. It is like nothing is real. Do any of you feel this 24/7. Not 24/7 but often.
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    Old 04-04-2005, 07:51 AM   #5
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    Re: Just diagnosed with CFS/Fibro. Need your help

    I'm so sorry you have CFS/Fibro. I'll try to give you my 2 cents worth for whatever help it might be. I know that now is a confusing and stressful time for you but it will get better as you begin to understand your body and what helps YOU. (Please excuse the spelling. FM has ruined this for me!)

    1) Does anyone with CFS/Fibro get better?

    Some do, some don't. The truth is that we're all different and you just have to keep trying until you find the regime that works best for you. I think age sometimes plays a part in this too. We older fibromites already have aches and pains that FM acerbates not that it can't be just as painful for younger patients.

    2) I have read several books on this disease a lot of them speak about homeopathic remedies such as magnesium, DHEA, and acidophilus. Do these work.

    Some people do wonderful with alternative treatments. I have read some peoples posts who have all but cured their DD (damned disorder) with homeopathic remedies. Some swear by the treatment they are receiving from the Fibro and Fatigue Centers and some wouldn't give up their prescription medications for anything. You have to find out what works for you. It's a journey you have to take for yourself but others are here to support and back you up as you search for what's right for you.

    3) I have been on Elavil 25mg a day for a week and it has not helped with my sleep, depression or pain. Is 25mg the right dose for a 170 pd. man? How long does it take to work? Is this drug going to screw up any of my vital organs?

    There are a variety of drugs to help with sleep. If Elavil doesn't work for you or you have side effects (I do think your vital organs are OK or you would have noticed problems right away) you might want to ask your doc for another alternative. Some of us do great on Trazadome and some do better on Ambien and others on different meds. It's trial and error until you find the right fit. I use Trazadome but at twice the dose I started out with. It give me 5 to 6 hours of sleep without any hangover effect but that's just me. We're all different.

    4)Why is it on days that I feel real bad I pee so much? Is this common in CFS/Fibro?

    Yeap. That's one of the things we learn to live with.

    5) Why do the joints and muscles in my legs hurt so bad yet they cant find anything wrong?

    It is a mystery but it's an effect of the FM. I now walk with a cane because it's so bad. However, I'm one of the lucky ones in that Tramadol in combination with Tylonal works for me to alieve some of the pain. Others are on much stronger meds and I have tried percoset and vicodin but they were like taking sugar pills for me. You will have to find out what works for you.

    6) Why does my back. from the center up to my shoulders, burn and sweat frequently? Does this happen to anyone else.

    Yeap! Just another of the lovely effects of our DD.


    7) Is there any way to get rid of this spacy/brainfog? This is the worst feeling I feel like I am dead or in a dream. It is like nothing is real. Do any of you feel this 24/7.

    If anyone finds a way to get rid of brainfog I want to be at the head of the line for treatment! However, I think when the pain is less you won't have it 24/7.

    I could ask a thousand questions but if I keep going no one will respond. If anyone could answer one question I would be pleased.

    I know this is a tough time for you. We've all been there. I have found this board to be a great help and solice as we search for answers on our journey through CFS/FMS or just one of the DD. I too have the combination and it's not fun! But I do now stop and appreciate what I do have in life and keep trying to find the right answers. Good Luck with your journey and know that we're all here for you.

    Hang in There,
    O

     
    Old 04-05-2005, 07:08 AM   #6
    Bothrops
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    Re: Just diagnosed with CFS/Fibro. Need your help

    Thanks for the replies everyone. Sorry it took me so long to reply. I only get 10 hours a month for free so I try to conserve. I even type threads and replies on Word and copy/cut/paste on net.

    Hope you all feel better

    Derek

     
    Old 04-05-2005, 07:46 AM   #7
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    Re: Just diagnosed with CFS/Fibro. Need your help

    hi,

    i'm new to the board but i'm not so new to fibro and i remember how confusing it was when i was first diagnosed, the thing with fibro is that it affects people in so many different ways that when you start reading about it you can become overwhelmed with the variety of accounts that are out there. i would recommend you read as much as you can and take from the wide range of information and advice anything that seems useful to you.
    so, i'll try to answer your questions in relation to my experience of fibro....


    1) Does anyone with CFS/Fibro get better?
    i think that people get better able to deal with it, fibro, for most people, is a learning curve. doctors (or at least most of those ive come into contact with in the uk) arent the most knowledgable or understanding on thsi issue and therefore the majority of patients start to take more responsibility for their own care. the more you read about fms the more you understand it (to an extent) and therefore the more likely you are to know how to respond to the particular symptoms you have on particular days etc. also, the longer you live with it the better you become at managing it, not just through understanding what is happening in your body a little more but also realising your limits and letting yourself rest - the most important thing i've learnt is not to ignore my symptoms and not to see asking for help or taking a rest as a sign of weakness.

    2) I have read several books on this disease a lot of them speak about homeopathic remedies such as magnesium, DHEA, and acidophilus. Do these work.
    i think as everyone else has said here it depends on the person. you first need to figure out what your main symptoms are and then investigate the relevant possibilities, there isnt a fibromyalgia treatment as such.



    5) Why do the joints and muscles in my legs hurt so bad yet they cant find anything wrong?
    i think that this is to do with the way that fibro enhances pain (im not sure enhance is the right word, sounds far too nice!!) from my understanding of it we experience pain more intensely so if for example, someone with fibro and someone without are both exposed to the same level of pain then the person with fibro will feel it as though it is a higher level.
    also, has your doctor investigated the possibility of myofascial pain syndrome in relation to your leg pain? i had so much pain in my knee that i couldnt walk on it without crutches and for the longest time the doctor said that they couldnt find anything wrong. eventually though i was told that it was myofascial pain syndrome (which can be a part of fibro) and that although the pain was in my knee the problem is actually at the top of my thigh. since having found that out i have been able to manage the pain well with a few simple exercises and over the counter pain meds.



    7) Is there any way to get rid of this spacy/brainfog? This is the worst feeling I feel like I am dead or in a dream. It is like nothing is real. Do any of you feel this 24/7.
    ah, fibro-fog. in my personal experience, sleep is the key answer to this, sounds simple but as im sure you know getting a good nights quality sleep can be impossible! i guess like most other things involved in fibro its about learning to live with it, make the most of your good days and dont beat yourself up about the bad days.

    hope some of this helps, even if it only helps to know that you're not alone!

    Will.
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    Old 04-05-2005, 12:01 PM   #8
    SuzU
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    Re: Just diagnosed with CFS/Fibro. Need your help

    I just want to echo the responses of all the other posters, and say welcome to the board.

    Just a possibility-when I was still in the work-up phase of getting my FMS diagnosis, my high level of anxiety made all my symptoms (including the brain fog) much worse and much more constant. Probably because the anxiety perpetuated the sleep dysfunction.

    Now that I'm on medication (Pamelor) my bladder symptoms and brain fog are significantly improved. I still have brain fog, but it isn't remotely as bad as it was a few weeks ago.

    The problem with meds is that they can also cause side effects that can mimick the symptoms. My rheumie says it involves trial and error to find the right combination/dosage of meds for you. When I first started the Pamelor, I slept for two days straight, it wiped me out. In FMS one can also be extra-sensitive to certain meds. That's ME!

    Get yourself to a good rheumie who understands the disease process and who will aggressively treat your symptoms.

    I'm also finding that this supplement called "Prelief" is helping my bladder symptoms substantially. It takes the acid out of the food that makes our bladder get so irritated. I asked my local Eckerd to order some for me. I was having frequent urination, burning in the bladder (and other uncomfortable, unmentionable places...) It seems to really help!

    Hope you are feeling better soon.

    Last edited by SuzU; 04-06-2005 at 03:13 PM.

     
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