Suspected CFS case

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Annya
New Member


Date Joined Mar 2006
Total Posts : 9
   Posted 3/7/2006 6:08 PM (GMT -7)   
Hi, I've just joined up with this forum. My doctor suspects that I have Chronic Fatigue Syndrome, and I'm waiting to see a specialist. I guess I'm interested to see whether my symptoms are in line with other people who have CFS and I'd also like to connect with other people who are perhaps in a similar situation to me.

Sorry that my post is so long, but I have quite a lot of symptoms and they're complex. I will greatly appreciate anyone who takes the time to read and respond.

To begin, I should explain that I'm a 24 year old female and I'm married. I'm unable to work and am mostly housebound.

My problems began with pelvic pains about three years ago and lower back pain about 18 months ago. They bothered me, but neither my doctor nor gynaecologist could provide any explanation for these pains. I became tender all over my body in early 2005 and had 2 really bad doses of the "flu" in mid 2005. I was tested for glandular fever or epison barr syndrome in September, and it came back positive, although it wasn't clear how long it had been in my system for.

Eventually my pelvic and lower back pain got so bad that I wound up in hospital last October, with still no real explanation provided. I have since learnt that I have glands in those areas, and wonder whether it was glandular fever at that time. I gradually improved, but I left my job at the time as the pain was so debilitating and I needed to rest up to get better. November 05 was good, then I briefly got nerve pain in December which went away.

The next month, January this year, I developed a really sore throat, followed by nerve pains, joint pains, muscle pains and numbness all over my body from my scalp to my toes, including my ears and the inside of my mouth. My doctor was most concerned about the numbness and I had a lot of blood tests and a CT scan of my brain, but nothing was found.

At the same time, I also found myself constantly physically and mentally exhausted. At first I put the exhaustion down to the fact that I've been through a lot, but over the past couple of months it's gotten worse. I was initially thinking about getting back into the workforce, but now there is no way I could do that.

I tire quickly from doing anything at all, needing to sit down or preferably lie down all the time. My joints hurt when I use them (my wrists and fingers hurt now, but I want to do this) even holding a book open becomes painful. I get dreadful headaches and random nerve pain (short sharp pains randomly over the body). I'm still numb everywhere. The numbness seems to be skin deep, because when I press down, I find tender spots all over my body. I often ache continuosly in my head, or arms or back or legs. I also keep getting sore throats on and off.

Occasionally (once every couple or few days) my pelvic area and lower back ache a great deal after I pass urine, but I have tested negative to bladder infections. Yucky to talk about, but this is a health forum- I tend to have irritable bowel problems, and often narrow stools.

In the last few days I have started to get a funny ringing sound in my ears, on and off. It usually doesn't last long. I have also recently noticed a flickering on the edges of my visual field, but again it doesn't last long and has only happened a few times.

I'm currently waiting to see a neurologist. My doctor says they will probably want to rule out multiple sclerosis, but that it could be chronic fatigue, particularly with it following glandular fever or else fibromyalgia. From research I've done, I think it sounds like chronic fatigue, but I wonder how it lines up with your symptoms? I know that the symptoms, length of illness etc varies considerably.

I'm quite depressed as this is affecting my life so badly. I can't work and we have debts and a lot of goals and things we want to save up for. My husband works full time, plus he has to do almost all the housework and cooking at home. I feel like a burden. Also, I'm trying to keep up my friendships, but whether I drive to visit friends and just sit down at their houses or have them over, it just takes way too much out of me. I feel useless and lonely.

From your own personal experience, does this sound like chronic fatigue? And do you know anything that could help me live a more normal life? Your time and your feedback will be so greatly appreciated. Thank you.

obs ann
Veteran Member


Date Joined Jan 2006
Total Posts : 679
   Posted 3/7/2006 10:23 PM (GMT -7)   
Hi Annya, Is there any chance you may have Lyme disease ... I would copy and post this thread over on the Lyme board and ask the same there about Lyme.

Better to rule out Lyme first and then go from there. Have they sent you to a Rheumatologist for RA testing.

Fibromyalgia and CFS and Lyme are so much alike, it's best to rule out Lyme first.

If it's CFS, you'll need a good CFS Dr. to treat you symptomatically. And best to find one that also suggests supplements like Omega 3 and others.

You may find some good articles on this site   http://www.immunesupport.com/
And some supplements that Dr.s recommend in their treatment for both CFS and FMS.

All the very best to you.
Ann


LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 


FallenAngel311
Regular Member


Date Joined Nov 2005
Total Posts : 90
   Posted 3/8/2006 1:12 AM (GMT -7)   
I've found Provigil has helped me a lot with my exhaustion/fatigue... it's no miracle cure, but it's made a HUGE difference. It was origionally developed to treat narcolepsy, sleep apnea, shift work sleep disorder (the fatigue resulting from these)... and it's being used too to help with the fatigue part of CFS.

It is quite frustrating when you don't have the energy to do anything... but it's important to remember CFS usually cycles from what I understand.

I have Anxiety too, so when ever my stress level gets high and my Anxiety kicks in... I often find that I'm even MORE exhausted than normal... 2 mornings last week I just could not get out of bed.

I've been having the headache cycles, joint and muscle pain for no apparent reason and at random (today it hurt to put on my socks). My intestinal track is screwy,.....

I think the worst feeling for me besides the fatigue itself, is the "brain fog" and short term memory problems. I forget the most simple things. I'll write myself a note to do something that i have to do or make a call I have to... and the next day I'll think that there was something I had to do, but I can't remember what, and can't remember where I put the paper telling me what not to forget. Sometimes, I stop talking in mid-sentence all the sudden and can't remember what it was I was even talking about, not even a second ago.

It hurts too, to have loved ones not accept it or understand it. The other day when I couldn't get out of bed, my mom YELLED at me to get my butt out of bed (to put it nicely). She had been attributing my fatigue all these years as laziness... and wouldn't accept that when i said I KNEW there was something else wrong... there was. Even after my official diagnosis finally after suffering from CFS for 10-11 years on Feb 24th... she still just didn't get it. But when she yelled at me to get my "butt" out of bed the other day... it hurt so bad. I started crying, then had an idea. I had recently written an entry in my blog about my feelings about CFS, what it is, symptoms, etc... with that thing that someone wrote about trying to help people understand those who have CFS... printed it out... and left it on her desk. She read it... and came to my room crying and said to me "Nikki, I'm really sorry. Now this is going to take me a while to accept and understand better... but I am going to try." I explained to her how much it hurts me when she yells at me because I can't do something, and that I have no choice BUT to accept it. I had tried to get out of bed that day because she wanted me to go shopping with her and my sister, but after I printed out my blog and whatnot, she actually said to me "if you don't feel up to going out... I understand and accept that." And the other day!!! I forget what it was I was supposed to do, but she said "Well, we COULD do this instead because that would make it a lot easier on Nikki". You have to understand my mom though. SHe's always pushed me harder than my sister, and never been understanding of anything I've gone through, or never really been supportive of me about anything in my life... so this made me really happy. Oh... I'm rambling again I'm sorry lol.

Anyway... you're not alone. I myself will only be 25 on March 11th. The most important thing to remember is that YOU know inside yourself you're doing what you can. Yes, it is frustrating when you can't do something, or don't have the energy... but you can't expect yourself to do things you just can't do. I mean... for example (not the best, but it's all I got for now)... if you had no legs... would you spend the rest of your life concentrating on how you can't walk? Or would you spend you life getting accustomed to the limitations you have, and do you best you overcome them?

Hopefully, you'll be blessed with people around you that at least try to understand and support you, and accept that there may be days you can't do anything... but there may be days you can.

If you need someone to talk with, feel free to email me or send me an IM. It's really nice to talk to people that can understand, and if I can be of any help at all... I'm here!!

Hang in there!!
Hugs,

Nikki

I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)

Medications:

CFS: Provigil 200mg, once a day
Anxiety: Lorazepam .5 or 1mg 3xs a day or as needed


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/9/2006 9:55 AM (GMT -7)   
Annya, I agree with Ann about getting tested for RA and Lymes and seeing a rheumaologist if you haven't already. Another thing is have they checked your ANA to see if it might be something RA or possibly lupus? The ANA blood test is often positive in people who have autoimmune diseases like lupus and RA. Your progression of symptoms sound a lot like mine. I was diagnosed with CFS in my early 20's, but after a while I was able to have a pretty decent quality of life for about 10 years. Then 2 years ago I got really sick again and my rheumatologist thinks it is probably lupus.

Just make sure your doctor rules everything else out. I hope your doc gets to the bottom of this and that you are able to get some releif from your symptoms.

Take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991
               Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4xdaily; Amitriptyline 10mg
          Neurontin 200mg; Steroid Cream and Mouth Rinse for mouth
          and tongue ulcers


Annya
New Member


Date Joined Mar 2006
Total Posts : 9
   Posted 3/12/2006 6:18 PM (GMT -7)   
Hi thanks for your responses. It's good to connect with other people going through a similar situation. Fallen angel, I was sorry to hear about your mum's attitude towards your illness, though it's good to hear that she may be beginning to understand it.

Obs Ann, you mentioned that it could be Lyme Disease. I live in Australia (maybe I should have said in my initial post). There is controversy around whether we actually have Lyme Disease over here. Apparently if it does exist it is very rare. I have been overseas, but not to contries where it is very prevalent. I would still consider talking to my doctor about it if I can't find any answers.

The day after I wrote my post a cancellation came up with the neurologist I was waiting to see and I went in. I described all my symptoms, but it all felt very rushed. She sent me away to have a blood test to test for 10 different things. I saw them on the sheet, but they were all abbrievations and letters for example ACE. She didn't take the time to expain them. I'm still waiting for the blood test results I'm also supposed to have a lower back x-ray and a brain and full spinal MRI.

If I have the MRI, I'll have to pay $375 Australian dollars for it, which we just can't afford. As the appointment was so rushed, I didn't have time to ask questions, but I gather that it's just to rule out multiple sclerosis. The neurologist actually said she thought it would be very unlikely that I'd have multiple sclerosis. Can anyone see the point in having it done for that price is that's all it for? Or does it have other purposes?

I didn't ask about Lupus as I hadn't read the post about it by hippimom2 yet. Maybe one of the blood tests was for lupus. I guess I'll find out when I talk to my GP. I'll also ask about a referral to a rheumatologist if I don't get any answers here.

I'll be honest. Because I'm not working and my husband and I have debts, we're pretty broke. I really can't afford to see all sorts of specialists and to have all sorts of tests. It's hard to know which ones would be the most beneficial. Some people suggest alternative medicines too and there's so many to choose from there. Which types of medical practitioners have other people found most helpful?

Actually, I was lined up to have a laparoscopy to check for endometriosis when I just had the pelvic and lower back symptoms. I didn't follow it through as my symptoms became full body. But I have just found out that women with endometriosis have high rates of CFS. I wonder whether that avenue would be worth following again.

Thanks again for all your input because this is driving me mad.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/13/2006 9:48 AM (GMT -7)   
Annya, it can be so frustrating to not know what is wrong with you and not know where to go next. I'm sorry that you might not be able to get some tests done due to finances. As far as specialists go, your regular doctor might be able to help you sort out what specialist might be the best for you to see.

As far as blood tests for lupus go, the ANA is usually the first thing they check. If it is positive then they usually check a lot of other blood work for lupus, rheumatoid arthritis, or other autoimmune diseases. THe ANA is not a disease specific test, it just shows that you may have autoimmune activity.

I really hope the doctors can give you some answers soon so they can start to treat your symptoms. Keep us updated.

Take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991
               Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4xdaily; Amitriptyline 10mg
          Neurontin 200mg; Steroid Cream and Mouth Rinse for mouth
          and tongue ulcers
 
Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 3/21/2006 6:48 PM (GMT -7)   
Hi,I suffered from CFS for year's but just credited to working a full time job and a part time job and so I was not getting the rest or sleep that I needed.But then I got really sick and the fatiqe got even werse.I had all kind's of test done and to come to find out I have crohn's,ra,oa,sejerens and AS as well most day's I have to take a nape.I do take a multi vitamins but still feel fatiqed most day's.
Thanks
Curley......
a.k.a.Mela...........

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