newbie, help, advice and answers please?!?

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sleepyheadgirl
New Member


Date Joined Jan 2007
Total Posts : 13
   Posted 1/4/2007 1:38 PM (GMT -7)   
Hi all,
First question is are any of you here from the UK and if so do any of you have the name of a CFS specialist?
 
Here's my story and questions..
I've been tired most of my adult life but have felt much more so in the past year and feel i'm getting worse week by week, the tiredness is bad but there's also a feeling of pressure around my eyes and at the front of my head that makes me feel like i'm gonna pass out or not be able to see (neither of these things happen, it just feels that way). however, my body feels quite normal, no real aches or pains that are too out of the ordinary and my body doesnt feel weak either really, i dont have the sore throat thing that's mentioned in all the diagnostic criterias nor do i have the sore glands etc. so its mainly the tiredness and this feeling in my eyes/head that are making me feel so bad, kind of slightly disorientated or as if i may fall over at any moment. I also dont notice any significant change in how i feel if i get active, if i do anything strenuous i'm tired, if i don't do it i'm tired, its not any worse for being active (although obviosuly i dont have it in me to do anything too active but for the time being i'm still working and just about managing normal life) So i guess firstly i'm wondering if anyone else has similar symptoms?i know each case is totally different but as mine doesnt seem to fit with the classic criteria it would be useful to hear if anyone else has felt the same way as i describe?
 
I've had my first 2 batches of blood tests done and all came up normal except low levels of Folic acid within my red cells, i've been put on supplements of folic acid and magnesium for a few months to see how i go but my doc kind of implied that if it doesnt help he doesnt know what to do next and said he'd do a referral to a specialist if i can find one. After reading all your posts i guess i'm years away from getting a diagnosis if i'm only just doing the first lot of tests?
 
I'm worried, scared and confused by whats going on, i feel like i'm barely holding onto normal life, i have a 3 year old son and i'm bringing him up on my own and i'm just so scared in case i cant look after him at any point.
 
well, there we go, sorry about long post, any advice, comments, similar stories, tips etc will help greatly. :o)

sparker
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 1/4/2007 2:09 PM (GMT -7)   

Hey sleepyheadgirl, sorry to hear you're feeling so bad.  I can't tell you I know of any cures.. but I believe you're experiencing the same symptoms that I and Orion82698 are experiencing.  We're feeling fatigued and tired all the time without the associated pain in the joints and other bodily aches that common CFS patients experience.

Personally, I've been experiencing my fatigue for a few years now and some days it's crippling and others I just manage to make it through the day.  I experience the similar kind of pressure.. that seems to focus behind my eyes and in my forehead.

I've gone through the battery of various tests.. as has Orion.  We haven't found cures or reasons yet for our illness, but having this forum definitely allows us some place to help others as well as feel like we're working together on finding the cause.  I think a big part of it is finding a good physician that will take your cause and work with you to find a solution.

The only suggestions I can really pass along is to not over-exert yourself.  spend your energies wisely and where needed.  If possible, take naps to get some energy back.  Eat healthy meals.  Stay positive as much as possible.. and use this forum or email me or any others when you feel like you need some support or someone to talk to.

We're all willing to help each other in any way around here.  If you have any questions or just need to vent.. post away.

Orion has posted his experiences in the thread called: Always tired:
I've posted some of my history in a thread called: Always tired too.


sleepyheadgirl
New Member


Date Joined Jan 2007
Total Posts : 13
   Posted 1/4/2007 2:23 PM (GMT -7)   
Hi Sparker,
thanks for your reply, i read through some of your and Orions messages after i'd posted mine and yes, there does seem to be a lot of similarities in our symptoms. I'm presuming you're in USA?
 
I know it makes sense when you say use my energy wisely but i cant help thinking that its almost like giving up if i stop doing all the things that make up my normal life, today was the first time i've not gone to something that i should have done because of being too tired, in the past i have just gone anyway wherever i'm meant to be and struggled through (feeling like absolute crap usually) rather than admit that i cant do something.
 
I also got an eye test today as this feeling in my eyes is so bad and so real that i was SURE my sight must have deteriorated but it hasn't so i guess i need to go back to docs again and keep on at him!
 
Oh the other thing is the allergy connection, whats that all about? i've not ever had any allergy but had a bad reaction 2 weeks ago and had to go to hospital, i still dont know what i reacted to and it could be a coincidence but as this is the first time i've ever had a reaction and some people mention allergies appearing/worsening with CFS that maybe fits too. so much fits but so much doesnt too.

mark21
New Member


Date Joined Dec 2006
Total Posts : 9
   Posted 1/4/2007 5:38 PM (GMT -7)   

hello i am from england and have recently been diagnosed, not by a specialist, but by a doctor who has lots of experience with m.e patients. his name was kieth hine, and it cost me one hundered and ninety pounds just to get told that i had m.e, but it was worth it. go to this website: http://www.measussex.org.uk/, keith hine is on the meet the experts page, and there should be a phone number somewhere on the site too, which is how i first found out about him.

i got put on an eighteen month waiting list for an nhs specilaist, so the chances of finding one are ridiculously slim, but there are gp's out there who have knowledge. i dont know what you mean by feeling tired for most of your adult life, but i was very unwell for years without knowing what the problem was until m.e was considered by my councellor, you dont have to have all the symptoms, m.e is a very erratic illness. i am twenty one now, it all started when i was about sixteen or seventeen.

ill check back to see if that was any help.


sparker
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 1/5/2007 10:21 AM (GMT -7)   
sleepy, yes, I'm in the USA. I know what you mean on giving up your normal life. I struggled for so long, as you're doing, to not give into the fatigue. For a long time I felt like I was giving up or just being anti-social when I didn't go out all the time like I used to, but when I did push myself when I was weak - I ended up being at some event where I could barely maintain a conversation and was struggling to stay awake. After a few hours, I would be exhausted while all my friends were ready to stay out for another 5 hours. It sucked... and still does when that happens.

I had my eyes tested also just about 2 months ago, and all was fine. It's so frustrating in that I've had every part and piece of my body checked by every type of physician and they all say I'm fine - when in fact I'm not. Something is off somewhere.

Same here on allergies. I've never had allergies - ever. Now, in the last year I've had general sniffles and sneezing that seems like allergies. I went to an allergist and they said I'm only allergic to dust mites. My skin has also become sensitive to anything. I usually shave my head in summer and let it grow out in winter. Now this winter, when I started to let my hair grow out my entire head broke out with irritations. Then, my face and neck began to go crazy.

Such a frustrating and non-specific set of symptoms that we all have that seem to defy simple diagnosis and treatment. We're all feeling the frustration.

Have you gone through any stressful period in your life recently or something that may have led up to this?

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/5/2007 2:28 PM (GMT -7)   
Hi sleepy, I just wanted to welcome you. You've already gotten some good information from sparker and mark. I can really relate to not wanting to give in to the fatigue and not wanting to give up parts of your life, but I finally had no choice and had to re-evaluate things and now have a new definition of "normal" life. I have found that when I do force myself to pace myself, I function better. However, I am not always the best at doing that. Sometimes I force myself through things which ends up making me feel worse and puts me in bed for a while. I have two young kids and can relate to how hard it is to be a mom and be sick.

I'm glad you joined us and I think you will find a lot of support here. We all need it when dealing with something that is so hard to diagnose and treat.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/



Sleepy Kat
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/5/2007 3:09 PM (GMT -7)   

Well, I've never posted to one of these before, but....

I have been fighting Chronic Fatigue and Migraines for about...6 Years now. I am 25 and feel as if I'm 125. I've read several forums on several sites and am just 'tired' (no pun intended) of not knowing my future.

My 'doctor' is ignorant and has given up on me (about 2 years ago) because he said there is nothing to do for me. It took him 4 1/2 years to test me for Mono, which I had and I don't know how many blood tests I have taken...too many!

I do have the migraines which I think are associated with my hormones b/c I dont get them as often if I am not on a birth control. I am late to work every morning and live 2 minutes away. I CANNOT get up and my body just crashes every night in bed. I've tried going to bed at different times, waking up at different times, diets, naturals, anti-depressants, sooo many drugs and tests and bull****! Ugh. So...

I may try the DHEA which I saw on some of the posts here but I've tried everything. I feel like I've already lived my years and its my time to go. Now, after finding out I have CFS, Migraines, some heart condition that I never remember the name of (heart flutters), slight scoliosis and extreme dizziness. There are soo many other symptons but I dont wanna bore the ~bleep~ out of you! lol.

I'm just glad to find people going through the same thing. Now, I am having pains from my wrists up and people keep saying its probably Carpeltunnel (or whatever)...just one more thing.

Thanks for 'listening'

Sleepy Kat


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/5/2007 3:13 PM (GMT -7)   
Hi Sleepy Kat and welcome. I'm sorry about everything you have been through. It is horrible that people have to endure years of feeling sick and not knowing what is wrong and being brushed off by doctors (my favorite thing is when they try to tell you it's all in your head).

I'm glad you found us and I think you will find support here. Don't let the doctor brush off the pain in your wirsts, you may be developing arthritis.

Take care and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/



sleepyheadgirl
New Member


Date Joined Jan 2007
Total Posts : 13
   Posted 1/6/2007 1:34 PM (GMT -7)   

Hi all,

thank you all for your messages, it is nice to just know that someone else knows what its like to feel like this.

Firstly Mark, do you think i will still have to pay for the doc you recommended if my GP does a refferal? were you referred or did you just book a private appointment? I've got the names of 3 other consultants that have a special interest in CFS but i havn't found one that is a specialist despit searching the net for weeks!

SleepyKat, what is Mono? and what are DHEA's? this is all new stuff to me, feel like i've entered a parrallel universe!

SleepyKat also mentions 'too many other symptoms to mention' thats the other thing i have loads of annoying minor symptoms that on their own i wouldnt bother the doc with or even mention to anyone at all but i cant help wondering how many things are related to the CFS i possibly have and which things are just normal that other people have too, sounds like an odd statement but having only ever been me i dont know what things nromal people experience so i dont know if these minor things are something or not!

the other question i wanted to ask is does anyone else have very specific timings when they 'crash'? i call it my 'slump' when it happens and i can pretty much time it, i am ok-ish for the first few hours of the day then i slump at about 11.30 in the morning, i feel terrible for an hour or so, then i slump again about 3pm really badly, then come round after a hour or 2, then slump again about 7pm and thats me for the day then, i cant do anything after 7pm, i can manage maybe an hour on the pc then i go to bed. because of the timings i wondered if it was food related but as i feel no signs of IBS and have no tummy troubles really i guess thats unlikely.

anyway, thats enough ramblings from me for now, will look forward to hearing more of your stories and any similarities with my symptoms, sarah :o)


kyzr40
New Member


Date Joined Jan 2007
Total Posts : 1
   Posted 1/8/2007 4:42 PM (GMT -7)   
  
 
   Hey guys im new here as well.  I am feeling the same things been tired now for about 3 years.  I have a constant tiredness behind my eyes.  I just want to close them all the time.  Im not particulary sleepy just have a tention and tiredness behind my eyes.  I work out twice a week now, used to workout around 4  days a week.  I am just really lathargic and dont wantt to do anything.  Oh I am 25 male living in Los angeles.  I have had a round of blood work and am seeing a specialist on chronic fatigue.  I have been on cortisol and t4 t3.  Also tried dhea.  The cortisol made me feel good for about 2 weeks then faded off completely.  The only test that came up low was my growth hormone levels So I am now taking Growth hormone injections for 2 months.  I have been injecting for 1 month now and I feel no change.  Any info or advice you guys have would be appreciated.  So tired of being tired.

Sleepy Kat
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/8/2007 4:49 PM (GMT -7)   
Thanks hippimom for the support. Its hard when your this age and just want to live your life at its fullest and cant. Grrrr.
Sleepyheadgirl, Mono is the 'kissing' disease that teachers always talked about in high school and jr high. its Mononucleosis or something like that. Its not really from kissing and you cant give it to anyone, according to my idiot doctor. Its kind of like CFS where it can come and go as it pleases. It has a lot to do with your immune system so if your good on Vitamins and such, usually you wont get it. DHEA is a product that I read about on some of the other forums and postings on this website about CFS. I dont know a lot about it but if you read some other postings, you will find what I found. There are several people that have taken it and it has helped the fatigue quite a bit. You can get it from a natural foods store is what they said. I've tried Feverfew for the migraines (Ive had a lot of people try that and it worked for them) but that didnt work for me either. Medicines and other crap doesnt work for me. I can drink 7 mountain dews in a day, or cokes or coffee, and it has no effect on me (other than peeing every other hour!).
I am going in Tuesday (next week) about my wrists and hands and I am going to ask the idiot doctor about CFS again. He is one of those docs that thinks its all in the head. Whatever. Give him a day in this body and see if he says that. 'YES. I choose to be tired and miserable all day long. Sooo much, that sometimes I dont eat because I dont wanna get up from the couch. GOD, I love my life!' lol. Something like that!
When I found out I had CFS, Sleepy, I  went to the local library and they had TONS of books on CFS (its also called something else...dont remember) and it had TONS of symptons. My biggest ones are migraines, memory loss (cannot remember A THING! I forget what I was doing or thinking constantly!), fatigue (an obvious one) and blurriness or dizziness...or both! lol. There was like two pages of symptons. Its really a 'fall back' condition where if the doctor cant find anything wrong with you, you are either depressed or have CFS...which depression is ALSO a sympton of CFS! Again, I love my life!
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