Unidentified illness - should I really resign myself to cfs?!

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ECG123
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/13/2012 8:41 AM (GMT -7)   
Hey, I'm 18 and have had numerous debilitating symptoms for four months. I had my whole life ahead of me and was just about to move to London to Persue my music, when this happened.

My symptoms are:
- bowling ball head (so heavy)
- racing mind (brain) but tired fatigued body which results in insomnia
- muscle twitching
- whenever I get reBmotely excited intellectually, my chest and arms shake furiously
- bouts of nausea
- bruxism (clenching my teeth)
- tight throat and neck
- sore/full sinuses and ears
- spaced out feeling like im on speed
- light, sound and touch intolerance that varies and can be "almost normal" to "very debilitating".
- ibs sometimes
- dark pigmentation on my skin (foot and stomach) but not face and not too severe as of yet.
- eptopic (extra) heart beat and palpitations

I've had a clear ct scan, clear chest x ray,
Normal thyroid twice, normal full blood count, no Epstein Barr etc... So what is it?!


Ive never been ill in all my life before this and was a fitness fanatic as well as an aspiring philosopher and musician. No doubt the stress of a level exams knocked me sideways a bit as I desperately wanted good enough grades for Cambridge but could that really of lead to this?!

If people share my symptoms, I feel like something needs to be done.
If we value ourselves and our futures we can't sit here anxiously while we rot. There must be an answer.

Of course i am anxious as a by-product of the above and I feel desperate. If anyone can shed any light on what's happening to me, I'd be so grateful. I need to sort it out so I can enjoy life again and Persue my dreams rather than watch them crumble. Thanks x

Carenpolar
Veteran Member


Date Joined Mar 2007
Total Posts : 672
   Posted 11/13/2012 9:25 AM (GMT -7)   
Welcome to the board----you will hear from others who can help you......
 
 
hugs, caren

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 11/14/2012 10:58 PM (GMT -7)   
ECG, Welcome to the forum. I am so sorry you are going through so much and at such a young age when you have so much ahead of you. I hope you can find some relief no matter what this turns out to be.

CFS is a possibility for you but may not be all that is going on. You sound like you are still in the finding out stage of diagnosis. Have you had a lot of blood work done to rule out other illnesses? CFS mimics other illnesses & they all have to be ruled out before a diagnosis of CFS can be given. There are no tests that can be done to find out if you have CFS, sorry. But it is important to really make sure of what you have. Have you had a lyme test? Have you had your vitamin D & B12 checked? These all can cause some of your symptoms.

CFS is not just a name for fatigue but is an actual illness with many different symptoms, I really hope you don't have it because the medical community still knows so little about it. Pace yourself as much as you can, get the necessary testing done so you can get a diagnosis. If your Doctor isn't on board with that then get a different doctor. This is your life & you are paying them. Ask as many questions as you want & keep us posted how you are doing. Many hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 11/16/2012 12:55 PM (GMT -7)   
You didn't mention how this all started....acute, or gradual?  That part is key to know.  I have had CFS, and now hashimotos encephalitis for almost 2 years now.  What I have learned is that you need to be your own health advocate.  As test results come back normal, it seems that your claim of not being well fall on deaf ears.  I even went to Mayo clinic here in MN and they really didn't help me, as no test result pointed to much yet I felt terrible.  I kept thinking that there HAS to be something that will show up since I feel this way.  I had an immunologist recommended to me here in MN that did test for some obscure anti bodies, and found one to be way our of normal....one that attacks the thyriod gland.  He thinks this may be part of the reason for how I feel, and I will start treatment for that.  I was tested for this even though the thyroid tests were normal.  SO.....get tested for everything you can think of.  It took me 19 months to get this one result that showed a definite abnormality.  Keep pushing on, it is your life were talking about!

tara_
Regular Member


Date Joined Jun 2011
Total Posts : 133
   Posted 11/24/2012 10:26 AM (GMT -7)   
Hello,

I'm not doctor so I'm not an expert in this, but I can just share with you what my doctor told me when he diagnosed me with hypermobility syndrome and suspected POTS.

I have a lot of what you have, including fatigue, ringing in the ears, nausea, light and noise sensitivity, feeling of a heavy head, palpitations, irregular heartbeat, racing thoughts, ibs.

My doctor told me that all those symptoms are attributed to POTS. I think I might have cranial instability as well (typical for people who are hypermobile) but that hasn't been confirmed at all.

Anyway, if you want to look into POTS, I would highly recommend potsplace.com

Best of luck
*Fibromayalgia, chronic fatigue syndrome, scoliosis, hypermobility syndrome

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 11/30/2012 8:53 AM (GMT -7)   
Yes, definetly find a GOOD Doctor/PCP, a bad one can put your treatment/stability back years! Unfortunately, Autoimmune Diseases are not even treatable, let alone curable,Yet. But the Symptoms Are Treatable and there are people on this website who have gotten some semblance of their life back. You age and good health should help and don't give up Music yet, we have people on here from the UK all the time, and they are'nt any further ahead on CFS they are'nt any further behind either. Above all, don't give up, depression is a worse form of life-killer than all the Autoimmune's put together. Hang in there You Are Not Alone.
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.

belladhw
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/1/2013 9:05 PM (GMT -7)   
Addisons Disease causes hyperpigmentation along with a whole lot of the other nightmarish symptoms you are decribing. Find an Endo and tell them to check for Addison's.

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/7/2013 11:19 PM (GMT -7)   
I had all the same symptoms, and a lot more... I found out it was Lyme Disease. Lyme Disease can mimic over 200 different diseases and can trigger many autoimmune diseases. But it can do EVERYTHING that you are explaining. Lyme has 3 different stages. Unfortunately, by the time it gets to stage 3, it doesn't always show up positive on tests and many labs don't have tests sensitive enough. The only lab I know of that really shows Lyme nearly all the time is Igenex. Good luck to you, and remember to always get a copy of all your lab work and cross check it yourself. Doctors make many mistakes too..
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

HoldingOutHope
Regular Member


Date Joined Jun 2012
Total Posts : 44
   Posted 1/8/2013 3:18 PM (GMT -7)   
I have had almost all of your symptoms at one point or another. I just posted this in the forum but I will copy/paste it here as well for you:

Hello.



First, I want to thank each and every one of you that haave replied to my posts and offered support to me. I have been sick for over 18 months with an array of different symptoms. My primary symptoms have been muscle weakness and fatigue. I have had other intermittent symptoms including tingling and numbness in my arms and legs and a million other weird things that come and go.



After Thanksgiving, I thought I was headed for a major flare up. But this time I felt more sick than I had ever felt before. I began to worry that something else was wrong, so I went to the emergency room. I presented with muscle weakness, mild shortness or breath, bradycardia (low heart rate), and numbness/tingling in both arms...and of course, extreme fatigue.



Before my blood work results were even back, I was getting the whole lecture abour anxiety and depression, etc. and how this was all probably in my head. I told the doctor that I didn't have anxiety (and if I did my heart rate would probably be elevated and not low) and that I had never suffered from depression. He shook off what I said and told me he'd come back when my blood work was done.



about fifteen minutes later, the doctor emerged and sat next to my bed and told me I was being admitted right away, that I was lucky to be alive, and that I could hold off on antidepressants and anxiety medications.



My CPK level was 28,000. The normal range is under 300. When this happens, a biproduct, myoglobin, is pushed into the blood stream and can cause kidney failure. A CPK of this level can also destroy the heart and liver. Thankfully, this was not the case for me. CPK is a muscle enzyme.



At any rate, it took a week to get my level back down into the normal range before I was released from the hospital. While I was there, a muscle biopsy was performed and sent to a special muscle lab at UCSF. about two weeks later, I was diagnosed with a lipid storage myopathy, which is a very rare muscle disease. I am in the process of undergoing more tests to find out which kind of lipid storage myopathy I have. I also have to see a neuromuscular specialist in March at UCSF (that was the next available 'urgent' appointment if you can believe that).



The reason I wanted to come back on here and share my story is because I always felt like CFS was a way of doctors to say "I don't know" or "I give up". I never resigned myself to feeling this way forever because I just don't think anyone should have to live with such debilitating symptoms. I understand I wasn't diagnosed sooner because my blood tests has previously been normal...but that said, this gave me hope that some of us, and hopefully all of us, at some point, might be able to get a concrete diagnosis...of something that can be tested for.



I don't know if everyone else feels the way I did about my CFS diagnosis, but I really struggled. So if there is anyone that feels the same, hopefully this offers some hope up.
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