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Old 07-31-2007, 05:45 PM   #1
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SOPHIABELLA HB User
Question Can Someone tell me if my symptoms are CFS???

confused: [B]Hi, I am new to this message board, and I am actually a bit nervous! It will be nice to not be so alone with my diseases. I suffer from Fibromyalgia, Chronic Myofascial Pain Disease,diabetes, hypertension and OF COURSE depression. Up until 2003 I had a very active life. I owned a Travel Agency, and had worked there for 17 years. I was, at that time taking 8 percocets a day and continuing to work even though I had pain. I had a hysterectomy Dec 2002 in order to correct my incontinence problem that I received from being very very sick in Jamaica and coughing so much I actually dropped my bladder 90 degrees. (Happy Joy Joy!) Anyway, 30 days later I was in the emergency room with lower back pain from hell. Ever since then my lower back cramps up on a whim and the pain doesnt go away until I am flat on my back, legs up on pillows and an ice pack on my lower back. I had to sell my business 9 months later. (cant run a good business when you cant be there all the time) I fell into a deep depression and slept for about 3 months solid. All of my old employees' and friends were calling but I didnt return any of their calls. I have been in a deep depression ever since. That job was EVERYTHING to me. Now, 4 years later, (trying to live off disability) my Fibromyalgia is wicked and I hurt all time.(unless I am submerged in water) Here is where my question about Chronic Fatigue comes in. (sorry if I am too chatty) I have a husband thank God, that does all the errands, grocery shopping etc. (I also have a teenage daughter from hell, but I love her all the same) Anyway, if I leave the house to do just 1 small errand perhaps 2 days in a row, I can forget the next 3 days because I am going to sleep and sleep and sleep. (mind you I only go out on good pain days...ie., days where I am not hurting as much as usual) If we go out on our boat for the afternoon, (and mind you I am on my usual methadone, and about 16mg of dialaudid every 4 hours in order to go boating) I have to remind myself that I can forget the next few days, because I will be to tired to stay awake. I know that fatigue is part of Fibromyalgia, but should it be to this extent? I no longer have a doctor that I know very well and am currently looking for a new PCP. I have never been diagnosed formally with Chronic Fatigue either. Does it sound like I have it? I get a lot of sinus and bladder infections,(the bladder/hysterectomy only helped for about 2 years and now I am completely incontinent..lovely huh) and I run low grade fevers for no reason. Please let me know what you think! If you think I do have it, is there any medicine that helps? I am afraid to do any exercizes because that may cause me to sleep even more! (not to mention the extreme pain exercizing would cause) Thanks for taking the time to read my story, and I would love to hear from someone out there so I dont feel so alone.
Kari

 
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Old 08-01-2007, 04:37 AM   #2
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Re: Can Someone tell me if my symptoms are CFS???

Well firstly I'd like to take my hat off to you for coping(even tho you probably don't think you are).You have some major ailments to contend with.
I would say that the over whelming fatigue is part of your fibromyalgia.Fibro and chronic fatigue syndrome are very much the same,the only difference being that with fibro you have pain aswell as the fatigue...nice.
I'm afraid its just like the rest of us here,finding out your limitations and using your energy wisely.Thank goodness you've got a supportive husband,and welcome to the board!

 
Old 08-01-2007, 10:57 AM   #3
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Re: Can Someone tell me if my symptoms are CFS???

Dear Diddi di,
Thanks so much for answering me! I have several posts out there and have not gotten one response until you. Thanks so much for your insite. Of course I was hoping for "Well you just take this vitamin and you will get your energy back" HAHAHA Arn't we all? And let me say that I think it is way cool that you are from England. My ancestry is from there and I have visited there before. Your weather is the exact same as it is here in Washington State, USA. Do you find that the weather and weather changes like when it has not rained for several days and then in comes a front and your body knows before the weatherman?

Yes I do have a husband who helps, and I am very grateful. But it seems that sometimes he actually forgets that I am disabled. I dont know why this is so, but when I am cooking dinner my lower back spasms up EVERY TIME, and I always end up laying down on the couch, on my side to eat dinner. Then I cant get anyone to do the dishes right away so they just sit there. (I used to be a great cook, now it is all micowave or quick things I can do for dinner, which also makes me feel like a bad wife) I cannot wash bathtubs, as the bending down would kill my back, and it takes me 5 times longer to do any chore in the house. I feel bad, but I cant get my family to really realize that I am not being lazy. My teen daughter, forget it, she rarely helps with anything, and my hubby just doesnt care too much about the mess enough to clean it up straight away. But he does run all the errands, and he takes me to every doctor appointment, so beggers can't be choosers right? Thanks so much for listening!
Kindly, Kari

 
Old 08-01-2007, 11:21 AM   #4
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Smile Re: Can Someone tell me if my symptoms are CFS???

Hi Kari,

It really sounds like something *is* going on. I would suggest that you find a doctor, if possible, that is knowledgeable in CFIDS to diagnose you or not. To me, it sounds like you are suffering from CFIDS, as well as FM.

I'm sorry that you have SUFFERED so much!!

Quote:
Originally Posted by SOPHIABELLA View Post
confused: [B]Hi, I am new to this message board, and I am actually a bit nervous! It will be nice to not be so alone with my diseases. I suffer from Fibromyalgia, Chronic Myofascial Pain Disease,diabetes, hypertension and OF COURSE depression. Up until 2003 I had a very active life. I owned a Travel Agency, and had worked there for 17 years. I was, at that time taking 8 percocets a day and continuing to work even though I had pain. I had a hysterectomy Dec 2002 in order to correct my incontinence problem that I received from being very very sick in Jamaica and coughing so much I actually dropped my bladder 90 degrees. (Happy Joy Joy!) Anyway, 30 days later I was in the emergency room with lower back pain from hell. Ever since then my lower back cramps up on a whim and the pain doesnt go away until I am flat on my back, legs up on pillows and an ice pack on my lower back. I had to sell my business 9 months later. (cant run a good business when you cant be there all the time) I fell into a deep depression and slept for about 3 months solid. All of my old employees' and friends were calling but I didnt return any of their calls. I have been in a deep depression ever since. That job was EVERYTHING to me. Now, 4 years later, (trying to live off disability) my Fibromyalgia is wicked and I hurt all time.(unless I am submerged in water) Here is where my question about Chronic Fatigue comes in. (sorry if I am too chatty) I have a husband thank God, that does all the errands, grocery shopping etc. (I also have a teenage daughter from hell, but I love her all the same) Anyway, if I leave the house to do just 1 small errand perhaps 2 days in a row, I can forget the next 3 days because I am going to sleep and sleep and sleep. (mind you I only go out on good pain days...ie., days where I am not hurting as much as usual) If we go out on our boat for the afternoon, (and mind you I am on my usual methadone, and about 16mg of dialaudid every 4 hours in order to go boating) I have to remind myself that I can forget the next few days, because I will be to tired to stay awake. I know that fatigue is part of Fibromyalgia, but should it be to this extent? I no longer have a doctor that I know very well and am currently looking for a new PCP. I have never been diagnosed formally with Chronic Fatigue either. Does it sound like I have it? I get a lot of sinus and bladder infections,(the bladder/hysterectomy only helped for about 2 years and now I am completely incontinent..lovely huh) and I run low grade fevers for no reason. Please let me know what you think! If you think I do have it, is there any medicine that helps? I am afraid to do any exercizes because that may cause me to sleep even more! (not to mention the extreme pain exercizing would cause) Thanks for taking the time to read my story, and I would love to hear from someone out there so I dont feel so alone.
Kari

 
Old 08-01-2007, 11:36 AM   #5
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Re: Can Someone tell me if my symptoms are CFS???

Dear Snowdonia,
Is there a specific test for CFS or CFIDS? They have one for Fibromyalgia.
Do you have it? What are your symptoms?
Thanks!

 
Old 08-01-2007, 04:14 PM   #6
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Re: Can Someone tell me if my symptoms are CFS???

Hey sophiabella,
You may want to take a look at the lyme boards and do some research on the internet. Columbia university has a lyme research program. You would be surprised at what you may find. Ex. Only 50% have bull's eye rash. screening tests can be inaccurate, Lyme is a multi-symptom and system disease, bladder problems, fatigue, arthritis, depression, ect. Ticker has some good info on the lyme board. It's worth a look. take care, mc

 
Old 08-01-2007, 09:24 PM   #7
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Re: Can Someone tell me if my symptoms are CFS???

Quote:
Originally Posted by mctassi View Post
Hey sophiabella,
You may want to take a look at the lyme boards and do some research on the internet. Columbia university has a lyme research program. You would be surprised at what you may find. Ex. Only 50% have bull's eye rash. screening tests can be inaccurate, Lyme is a multi-symptom and system disease, bladder problems, fatigue, arthritis, depression, ect. Ticker has some good info on the lyme board. It's worth a look. tak care, mc

Last edited by SOPHIABELLA; 08-01-2007 at 09:31 PM.

 
Old 08-01-2007, 09:28 PM   #8
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Re: Can Someone tell me if my symptoms are CFS???

Thanks mc, I will take a look. I have thought about Lyme before but the rash part always held me back from looking into it further. Scary thought though.
Hugs, Sbella

 
Old 08-05-2007, 10:11 AM   #9
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Re: Can Someone tell me if my symptoms are CFS???

Hi Shopia...you live in an area that has high Lyme Disease. A person DOES NOT need to have the bulls eye rash to have Lyme. Were all different and there are different strains, co-infections and so forth. Post on the lyme board and ask for the symptoms ..you can also find them on the internet. But a newbie to it can get very confused as what to believe and what not to believe. If I were you I would ask for a Lyme Literate Doctor in your area and get to one. Like CFS, Fibro there aren't very many doctors that specailize in Lyme.

I had./have Lyme, my system broke down. Wound op also getting high titers for Epstein Barr and Cytomeglovirus...these are "mono" and yes can do alot of damage or cause death. You treat with antivirals. Read up on Dr. Martin Lerner's protocol ....these are "herpes" so nothing to fool around with...

Also new study for fibro...Read up on Dr. Charles STratton's protocol for fibro. Seems that the Chlamydia Pnuemonia bacteria is very easily spread through sneesing coughing silivia ect....Everyone seems to have this in their systiem just depends on how our immune system deals with it. You will find alot of informatioin on the internet about it. It can cause M.S. Demetina, Alsheirs, Fibro, ect. People run fevers for reasons...or get tired for reasons...typical every day doctors do NOT have open minds...they are text book and that is it...

for all of the above you need to see someone that Specailizes in them....

There are reasons for the way you feel. antibiotics or antivirals are going to do you better than pain pills and antidepressants...

Hope you are able to find some answers...

good luck!!


 
Old 08-05-2007, 01:42 PM   #10
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Re: Can Someone tell me if my symptoms are CFS???

Dear JOJO thanks so much for your reply! I looked at the Lyme symptoms and I do have some, but not all. The soar throats was one I dont have, yet its funny, today I have a soar throat! Haha Power of suggestion? I really didnt think we had a tick problem in our state. We dont even do anything for our dogs at the vet here either, since our vet said we dont live in a high tick area. But now you are saying there are different strains? And the Chlymdia thing, that is a worry, thanks for bringing that to my attention as well! I do not have a healthy immune system, it seems that I catch everything under the sun for a virus, and I have constant bladder infections, (I think because my bladder fell again and I need surgery again) and constant sinus infections. I have some heavy duty antibiotics from Mexico, like Cipro and Batrum and I know which one to use for what thing and for how long since I always have these infections. I live in sort of a hick town about 45 miles from Seattle. I have been through 17 docs since 2002 trying one treatment or another. The hard thing is my PCP 13 year old son died and she quit working. She was the best, and understood me the best and I saw her for years. Since she left it has been one big nightmare after another since other docs dont know me as well, and it truely seems nobody cares. The pain doctor I just started seeing I brought in some info from Time mag. about a patch and meds that help fibro and he just dropped me just like that. He said to go to Seattle where there is a fibro doc. That is a long drive for me and I have seen so called specialists in fibro before, nothing good ever came of it, but a lot of torture treatments. Thanks so much for giving me more info to look up. Sorry to hear you are having such a bad time! I hope you will be okay! Take care..Kari

 
Old 09-05-2007, 12:15 PM   #11
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Re: Can Someone tell me if my symptoms are CFS???

Quote:
Originally Posted by jojo View Post
Hi Shopia...you live in an area that has high Lyme Disease.

I never heard of Washington State being high on Lyme disease; I need more information on this since I am trying to convince the Infectious Disease Center to give me the test, yet they never place a red flag about the places I travelled to and WA was one of them..... Thanks!

Last edited by Nexis; 09-05-2007 at 12:17 PM.

 
Old 09-07-2007, 02:32 PM   #12
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Re: Can Someone tell me if my symptoms are CFS???

Hi

I am newbie here. Joined because I am always dealing with health issues mainly in my family--not just myself. I have had CFS since I was 26 years old I am 39 now. It sounds like you have something but many things can make you very tired. Before I was diagnosed I had to get several tests done to rule out that is not what it was, these included Lyme, MS, Lupus were the main tests. Other were thyroid, diabetes etc.. These all mimic the same type of symptoms as CFS or CFIDS. There is a great web site called Chronic Fatigue Assocation of America you can ****** it. You can search for a doc who is familiar with CFS also. You need to rule out these diseases before you know if it is truly CFS. Good luck and keep us posted.

 
Old 09-19-2007, 04:48 PM   #13
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Re: Can Someone tell me if my symptoms are CFS???

Aloha Kari:
My name is Nirlepa & I do have CFS; there's a test you can take if you have a PCP ask him to recommend an Epstein barr virus exam & I sympathize with you. I've had it since 1996 & I'm 38 yrs. old, but a great thing happened as a result; I tried Acupuncture & it helps alot so I am not in my last year of my education & I will soon be able to help others.

Also, it can help you with the Fibro & the incontinence. I'm sooo sorry you have gone through all this. Please consider Acupuncture it's changed the quality of my life dramatically & I'm sooooo grateful for having gotten the disease because it took me to Acupuncture school.

Please don't give up
Nirlepa


Quote:
Originally Posted by SOPHIABELLA View Post
confused: [B]Hi, I am new to this message board, and I am actually a bit nervous! It will be nice to not be so alone with my diseases. I suffer from Fibromyalgia, Chronic Myofascial Pain Disease,diabetes, hypertension and OF COURSE depression. Up until 2003 I had a very active life. I owned a Travel Agency, and had worked there for 17 years. I was, at that time taking 8 percocets a day and continuing to work even though I had pain. I had a hysterectomy Dec 2002 in order to correct my incontinence problem that I received from being very very sick in Jamaica and coughing so much I actually dropped my bladder 90 degrees. (Happy Joy Joy!) Anyway, 30 days later I was in the emergency room with lower back pain from hell. Ever since then my lower back cramps up on a whim and the pain doesnt go away until I am flat on my back, legs up on pillows and an ice pack on my lower back. I had to sell my business 9 months later. (cant run a good business when you cant be there all the time) I fell into a deep depression and slept for about 3 months solid. All of my old employees' and friends were calling but I didnt return any of their calls. I have been in a deep depression ever since. That job was EVERYTHING to me. Now, 4 years later, (trying to live off disability) my Fibromyalgia is wicked and I hurt all time.(unless I am submerged in water) Here is where my question about Chronic Fatigue comes in. (sorry if I am too chatty) I have a husband thank God, that does all the errands, grocery shopping etc. (I also have a teenage daughter from hell, but I love her all the same) Anyway, if I leave the house to do just 1 small errand perhaps 2 days in a row, I can forget the next 3 days because I am going to sleep and sleep and sleep. (mind you I only go out on good pain days...ie., days where I am not hurting as much as usual) If we go out on our boat for the afternoon, (and mind you I am on my usual methadone, and about 16mg of dialaudid every 4 hours in order to go boating) I have to remind myself that I can forget the next few days, because I will be to tired to stay awake. I know that fatigue is part of Fibromyalgia, but should it be to this extent? I no longer have a doctor that I know very well and am currently looking for a new PCP. I have never been diagnosed formally with Chronic Fatigue either. Does it sound like I have it? I get a lot of sinus and bladder infections,(the bladder/hysterectomy only helped for about 2 years and now I am completely incontinent..lovely huh) and I run low grade fevers for no reason. Please let me know what you think! If you think I do have it, is there any medicine that helps? I am afraid to do any exercizes because that may cause me to sleep even more! (not to mention the extreme pain exercizing would cause) Thanks for taking the time to read my story, and I would love to hear from someone out there so I dont feel so alone.
Kari

 
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