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Miss Magpie

New member
Joined
Nov 6, 2014
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
State
South Australia
I have been suffering from chronic tiredness, muscle aches, brain fog and recently, due to the ongoing nature of my health, depression.
I had Glandular fever about 5 years ago. which is the closest understanding of what I am feeling now however my 6 months of glandular fever is nothing compared to how i feel currently.
it started about 3 months ago, I had recently moved in with my partner and my dog had died and i had started a new job which i was thoroughly enjoying.

It started with chronic migraines which where debilitating and left me in bed for days exhausted from i am guessing the pain. My first doctor dismissed everything hinting I am looking for a handout from the government as all the tests she ran came back with nothing abnormal (she aso didnt believe CFS or FM existed). My second doctor took a lot more time and referred me to see a neurologist (which i can't get into for another 8 months). However all the tests she ran also came back with nothing abnormal. I had low vitamin d (which i take tablets for) and low protein (which i am treating with eating a lot of tofu, fish, eggs, and even protein powder). However the latest blood tests that came back showed they were all restored to normal levels. each day I have been getting worse, the only good thing to come out of the vitamin d tablets and protein intake has been my headaches are not every day and are not as strong.
However now the headaches (now diagnosed as chronic migraines) have lessened other underlying symptoms have surfaced which i believe were there since the migraines started but were less noticable with such chronic pain. Sadly I had to leave my job because i found I would wake up each morning feeling mentally and physically drained, like I had been hit by a bus. Even the most minute tasks seemed impossible.
my doctor has suggested that its my spiritual side not getting what it wants but how can something I am not even sure I believe in be affecting my health so dramatically?
A normal day now consists of me getting up (if i have the energy) sitting outside and watching mindnumbing shows until my partner comes home from work. He then makes dinner for us (i dont have the energy to make food) and then we go to bed where I cant sleep although I am exhausted until the early hours of the morning. Then repeat.
At the beginning I tried doing housework, gardening, cleaning the cars. But found those tasks to be so draining I felt like I was going to fall down.
My symptoms include
Headaches (recently milder enough so that i can choose not to take painkillers)
Exhaustion whether I am lying in bed or trying to do the dishes.
foggy brain and terrible memory.
body aches especially in my legs, shoulders, neck and back.
random stabbing pain in my head like a pickaxe.

When I try and have a normal day such as studying( i am in my final semester at University after 5 years of studying) I am wiped out by mid afternoon and the following week am in recovery. I was accepting that we would find what was wrong so I could begin treatment but I am losing hope. For the first time I am feeling so depressed, helpless and frustrated. Yesterday saw me sobbing for hours, too exhausted to move.
and today I woke up sobbing which was heartbreaking for my partner because he had to leave me to go to work so he could support us.
I am now so terrified that noone with diagnose me and that this will be my existence for the rest of my life.
I am young, I have dreams, I have an amazing family and partner. I have passion. But I am losing this passion, I am scared to go to someone else for help incase they accuse me of being a doll bludger or tell me my pain is psychosomatic.
So recently my partner and I have been looking for answers on the net and he thinks its FM and CFS. But as you all know doctors are so unwilling to diagnose patients with these illnesses. I have now hit a stage where I dont have the energy and my legs hurt too much for me to see a gp because driving is so exhausting.
I just want to be well and live a normal healthy life.
Yesterday I missed the last class of my degree which was devastating because I have spent 5 years studying and to miss that milestone is heartbreaking for me.
I live in South Australia where their arent many specialists and the doctors are mostly very old fashioned so I am struggling to get help.
I want to know if this is normal? I have a friend who has been diagnosed with FM yet she lives a pretty normal life, working 5 days a week etc... I know my health would not allow me to work currently so was wondering is there varying degrees of FM and CFS? or is every case treatable so that I could potentially live a normal life again?
I am at my breaking point.
 

Miss Magpie

New member
Joined
Nov 6, 2014
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
State
South Australia
I should also add in my symptom of constant Nausea. Everyday all day.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Having so many symptoms makes it hard for doctors to figure out what is wrong and often their bedside manner is the pits. Also sometimes it takes diseases a longtime to develop and so tests are often very normal in the early stages, but I know how frustrating it can be to be told nothing is wrong when something is wrong. Try and hang in there and use this forum to learn coping skills and learn to manage each symptom. This forum is filled with all kinds of helpful ways to ease pain and improve sleep, ways to exercise and even things to eat or not eat in a attempt to stop or ease symptoms.

Be sure to ask more questions and take time to answer other members posts. Read the old and new posts, and the blogs and look to the bottom of the main forum page for even more information. Make new friends who truly understand your pain and most of all believe you and will offer a kind word or suggestion to fix a problem.

I might suggest in a understanding way that you try and see a therapist in mental health to get help with depression. This part of any illness makes coping harder and brain fog worse. By talking with someone who can help without being judgmental will make you outlook on life better and make it easier for you to manage your illness until a proper diagnosis is made.

I am glad you found the forum and look forward to getting to know you better by reading your posts. :)
 

Neen

Member
Joined
Sep 29, 2014
Messages
22
Reason
DX FIBRO
Diagnosis
00/2010
Country
As
State
South Australia
hi there you sound just like me can't do much and when you do your in bed for days I also live in South Australia and I see a dr Kerry Harris at Stirling she is wonderful and looks out of the box she has just done a poo test on me and found out I have no E. coli in my bowel so that means I sm not absorbing my foods I have had a bad relapse the last few months biuut once I get the flora in my gut right I'm hoping I will pick up .this illness has no reasoning to it as you say nothing shows up in blood test which is very frustrating I also see a mental health care worker she comes to my house as I don't always have ythe Englert to go see someone. You could benefit from talking to someone I know it helps me I forgot to say dr Harris sees a lot of patients with chronic fatigue and fibro so she does know what she is doing you might have to wait a while to see her do you take supplements magnesium and b12 are helpful you could google and get information that way I hope you have luck Janine
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Prayers coming your way. DON'T GET DISCOURAGED! Have you tried support group with any of you local Churches? Try to find out, where and what to do. God Bless.��
 

camille14

Member
Joined
Nov 16, 2014
Messages
15
Reason
Undiagnosed
Diagnosis
10/2008
Country
CA
State
New Brunswick
hello, I am also a student in my second year of nursing. I understand what you are going through and it is very dificult. You probably have fibromyalgia unfortnately, but this is not the end of your life. You need to have your GP or emergency doctor if he wont reffer you to rheumatologist. You also need your doctor to eliminate anything else it could be. This takes a while I know but you will get your answer. I know it is frustrating. so blood test to eliminate anything related to chronic pain, neurologist, joint scan, etc. You will get diagnosed though. Avoid all judgemental HCP. And after you get diagnosed or now you can start working on getting better. I will not lie, you will probably need at least a year or two before you can work and be close to normal again and a lot of support and hard work.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Not a pro here, by the sounds of it your in the vally, don't give up k? If you have u tube there's a vast amount of education about fibro, I've spent 60 hrs educating myself, just go with what feels natural, careful not to take any one u tube as (the answer). There's also books to read from amazon.good luck..keep your chin up!
If u don't take vitamin b 12 , then try it, there's all kinds of great companies out there, I'm not getting any $ for saying this but, TriVita.com is reputable.
 

Lyndsey

Active member
Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Hi there,

Im sorry to hear that you are struggling right now. It is so hard not to get discouraged, I understand how it feels to deal with chronic migraines, I have been dealing with it for a very long time, as well as dizziness, body aches ect (diagnosed almost a year ago with fibro/CFS and auto immune disease). I know how exhausting and debilitating it can be I recently had to stop working as a result.... I am still seeing doctor after doctor and trying tons of medications that dont work. Keep pushing for help with doctors and try to find one that helps you. It took me a long time to find a GP that was helpful with wanting me to find solutions and actually seems to be genuine. I have also suffered from depression as a result, and know how frustrating it is to explain to doctors that "feeling ill all the time" is the cause of feeling depressed. I did try an anti depressant that seemed to get me through a really bad time.

Keep fighting you will get through it. xoxo

Lyndsey
 

MissJo

New member
Joined
Dec 27, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
03/2006
Country
US
State
TX
Your story sounds so familiar. I have been down this road for about 8 years now. I am convinced that stress triggers this mess. I think it is there waiting in the wings and can get set off. My opinion only. My issue is that it has been progressive with no repreive so it is easy to feel defeated. Ihave been a nurse a very long time and I even went through those thoughts of having spent my entire life caring for others health to just lose mine at way to early an age. In walks depression. My feeling about a diagnosis is this....it does not matter if you give this a name. IT is real. IT is not imagined, made up or desired by any of us in any way. It really does not matter if they tell you FM or CFS or whatever because it is not curable. What do they do? Treat the symptoms. Thats it...treat the symptoms. So for me it is about learning ways to live with the symptoms. I feel like I am the poster child for FM symptoms, but would not be a bit surprised it I also have Sjogrens...again...all they do is treat symptoms. Find the best ways you can find to tolerate the changes. I have had no luck finding a good family doctor or internal medicine. I have had my share of bad ones! I do have a pain management doc who believes me and works with me to find the best answers for me...not what he wants, but what works best for me. Don't give in to it....don't give up. Most of all don;t be so hard on yourself. I am thankful you have a partner who loves and cares for you. I am alone and that is really, really difficult. Take it one day at a time and find what works for you. With effort you will find some things or times of day etc. that your world is better to cope with. Best of luck my friend.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
Most migraines are due to a lack of oxygen to the brain.
Try smelling sauce, like when boxers get knocked out.
The have sinus looked into. This will do all of that to your body as the brain is not getting the oxygen it needs to function. Its does also sound like fibro. Hang in there and learn as much as you can. Try things it can't hurt. You're already in pain. Find the triggers.
Let us know how your doing.
 

ailurophilia

New member
Joined
Feb 5, 2015
Messages
2
Reason
Other
Diagnosis
00/0000
Country
US
State
New Jersey
You have described very closely to how I am feeling. I am suffering from the same symptoms physically as well as the depression. In addition to my severe dust allergy symptoms I've been dealing with at work.

Yes, I'm still at work. I've been crying every morning in frustration and today my fiance pick me up out of bed and brushed my hair. I'm like a limp doll, literally. Until I can finally gather enough enough strength to convince myself that if I don't go to work I might as well be buried alive and die under my 80k of student loans.

At work, I'm mostly a zombie, my coworkers have seen me slowly waste away in the past few months. I'm still here though, although now I'm mostly staring off into space.
 
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