Don't Know What to Do...

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Livvy123
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/11/2013 11:26 PM (GMT -7)   
Hi, this is the first time I've posted here but I just really need some support...

I'm 19 years old, living in New Zealand, and I've had CFS since I was 14 after I had a really bad reaction to a tet/dipth vaccine. It has improved a bit over the years, but I still can't push myself otherwise I wind up having to spend the week in bed. Spending more than 2-3 hours on my feet for more than one day in a row results in this 'crash', which means that the sort of work I can get is limited and to be honest, it feels like my entire life has been put on hold.

The worst part of all this is that I have achieved grades good enough in my competitive course to get accepted into medicine (only 150 places out of 1400 students applying), which I've wanted to do for a very long time - it all suits me down to the ground, apart from the exhausting hours on your feet. I know that if my CFS doesn't improve I won't be able to manage the intern/house officer years (which make up 3 consecutive years in total) as they wind up being 60+ hour weeks roaming the hospital pretty much non-stop. It's put me into a state of depression seeing my ideal life being pulled away from my grasp all because of a stupid fatigue condition that I have no control over. I can't really go blindly into this with the opinion of 'it's be fine' as, if I can't handle it, that would cost me $100,000 that I can't repay and have nothing to show for it.

Has anyone found anything that works to help speed up the recovery from this? I only have a few months to decide on whether to take up my place or not. I really don't want to let this condition rule my life to this degree.

Thanks in advance!!

johnnyboy
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 11/12/2013 12:00 AM (GMT -7)   
Sorry to hear you are not well. I got sick when I was 21. (30 now) I too had to give up lots of my dreams and goals. I know exactly how you feel. ME/CFS doesn't go away unfortunately. Its something you have to learn to live with and find what works for you. I switched careers and worked less hours and did very well for myself for many years. Now its not as easy...My point is that you can still have a productive life, but working 60+ hours is very unlikely, thats just reality. That being said, I have found that LDN (low dose Naltrexone) has worked well for me. Look into it and see if it works for you. It takes about a month to kick in, but it really helped me. Its no cure, but its helpful. I hope you feel better, let me know how things go.

-Johnny

Livvy123
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/12/2013 2:59 AM (GMT -7)   
Hi Johnny, thanks for your reply. So your CFS hasn't improved at all since when you got it? I've found mine has a little but it may have just been because I was young when I got it, as I know that kids are supposed to be able to make decent recoveries from things like this. That's really interesting about the low dose Naltrexone, I had no idea it was being used for CFS - I'll definitely look into that, that's great that you're finding it helpful. Thanks again!

alsky
Regular Member


Date Joined Oct 2013
Total Posts : 42
   Posted 11/12/2013 10:55 AM (GMT -7)   
Hi guys

I have had CFS for many years (diagnosed in 1988) Evening Primrose oil helps a lot. I also take Effexor. I function very well as long as I stay on my regimen. As Johnny says, you have to find what works for you.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 11/14/2013 12:24 PM (GMT -7)   
Alsky-Just curious on the Effexor that you menioned helping.  Any specifics on what symtpoms it has alleviated for you?  I tried Wellbutrin a year or so ago and it really didn't do much for me.

alsky
Regular Member


Date Joined Oct 2013
Total Posts : 42
   Posted 11/15/2013 12:51 PM (GMT -7)   
Hi Minnesota

I function at close to 'normal' as long as i stay on EPO and Effexor. Energy level is not great but ok. Please do research on Effexor as side effects can be harsh and withdrawl very difficult.

EPO helps me more. best wishes

CFSNZ
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/25/2014 4:25 PM (GMT -7)   
Hi Livvy,

I've had CFS for just over two years now. I'm around your age, and I also live in New Zealand.

I don't think anyone has the right to tell you to give up on your dreams and goals, or that CFS does not go away. Yes, there is no proven cure. However, there are cases of full recoveries.

The idea is to be aspirational, and work towards being one of these people that make a full recovery. This is a goal that I have made significant progress towards (though I started from a low base). Admittedly it is an uphill battle.

I talk to a lot of people with CFS, and I find that those who achieve the best results have four things in common:

1. young (something in your favor)
2. open to trying a range of treatments
3. take time out to recover fully
4. start with a less severe case of CFS

On 2. (treatment options), here are what I consider the most likely to get you back on your feet before your first semester of medicine:

Diet

Diet is so commonly cited by patients with CFS that it would be foolish not to give it a try (also, dietary changes are easy to implement as they require no prescription, and take around one month to know if they're working). Most CFS-diets have the following in common:

- No sugar (includes cutting down on fruit intake)
- No processed or refined food (e.g. margarines, pre-prepared sauces, potato chips, biscuits)
- No gluten
- No dairy
- Minimal refined carbs (e.g. pasta, white rice, flour)

Some people also find it helpful to reduce their fat intake.

Yes, the dietary approach is quite strict, and yes the mechanisms by which diet helps CFS are unclear, but so many people attest to diet aiding their recovery (myself included) that it's worth a shot.

IV vitamin C

This is a controversial one, and something that your future doctor colleagues certainly won't endorse! However, there are a lot of positive testimonials for IV vitamin C. It is said to be an anti-viral, anti-microbial, anti-bacterial and anti-fungal agent. It is also said to stimulate the immune system and mitochondria (both things that seem to be implicated in CFS).

I think the basic concept behind IV vitamin C treatment is that it kills a lot of 'stuff' that may be perpetuating your CFS. You don't need to make any assumptions what may be keeping you ill, as it kills such a broad range of viruses, bacteria, etc.

Sleep

Most people with CFS find it difficult to sleep. In my experience, the best treatment for this, is a tricyclic anti-depressant.

In small doses (well below the dose required for depression) these medications promote sleep. The most common is Amitriptoline. However, I prefer to use Dothiepan, as Amitriptoline seems to give me postural hypotention.



It's likely you'll need to find a doctor that takes a special interest in CFS. I'm happy to recommend some in NZ if it's helpful.

I've heard great things about LDN, so I'd be interested to hear how you got on.



If you're not feeling well enough to start your medicine degree, then I see two options:

1. Ask if you can delay your start until next year. If you're honest about your situation and how much the degree means to you, I'd be amazed if they weren't sympathetic. This would be a great option as it would give you a full year to focus on recovery. It's best to ask sooner rather than later, as you'll know exactly where you stand.

2. Slog out the first year or two, then drop out of the programme for a couple of years to recover. I know somebody who did this for Optometry at the University of Auckland. The idea is that once you're in the programme, and completed a year of two, the university is reluctant to let you go. Therefore they are quite accommodating if you want to take time off



I wouldn't worry too much about the debt - as you'll know, this is interest free in New Zealand and you only have to make repayments when you earn over a certain threshold.



I can certainly sympathize with your situation. I also had to make a difficult choice about a career due to my CFS. Like you, I underwent years of hard work to earn an A to A+ GPA and get into the career of my choice.

I hope this response has been helpful. I have a list of a 100 more things you could try, so feel free to get in touch if you're interested!



lynxlovessugar
New Member


Date Joined Jan 2014
Total Posts : 15
   Posted 1/26/2014 10:01 AM (GMT -7)   
Hi there,

I find that I can personally relate to your story, as I want to get into veterinary medicine, which has been my dream and which also means I'm to get the necessary work experience, etc and I am facing the same problems in terms of feeling depressed and anxious about the future and feeling as though my dreams are falling apart because of the illness.

Just wanted to say I am glad I came across this post, as I find CFSNZ's post very helpful too.

Cutting down gluten sounds difficult, though, as I just realized that pretty much all the food in my house contains it lol. And I'm kind of sad I can't have fruit, either. But I think it's worth giving a shot.
Lynx

20 y/o female

Chronic Illnesses: Depression, Anxiety, Chronic Fatigue Syndrome, IBS & Fibromyalgia

Meds: Cymbalta, Propanolol, Trazedone, Sertraline and Vyvanse

Supplements: Omega-3 Complex, Zinc, Coenzyme Q10, Probiotic, Melatonin

lynxlovessugar
New Member


Date Joined Jan 2014
Total Posts : 15
   Posted 1/26/2014 11:12 AM (GMT -7)   
As for my advice, I wish I could recommend something natural but I haven't found that my natural supplements help much or maybe I haven't been taking them long enough for them to work... Vyvanse is a drug that works for me right now though... only been on it for a week though.
Lynx

20 y/o female

Chronic Illnesses: Depression, Anxiety, Chronic Fatigue Syndrome, IBS & Fibromyalgia

Meds: Cymbalta, Propanolol, Trazedone, Sertraline and Vyvanse

Supplements: Omega-3 Complex, Zinc, Coenzyme Q10, Probiotic, Melatonin

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/26/2014 2:53 PM (GMT -7)   
I have also been on Vyvanse for the past year now. I can say this is the one thing I take that has made the most difference for me. Saline IV's are also beneficial. I had this for just over 3 years, and have tried all sorts of supplements and vitamins. The vyvnase was something my doc brought up to help with the brain fog I have, and it does help to clear that up, and give a boost of energy. I can honestly say that the only reason I can still work FT (still tough, but just need to do this for another 4 years and I can then retire) is due to this drug. It allows me to stay functional at my job and thus earn money and have health insurance. Magnesium malate helps, as does DHEA for me. Hopefully this helps you!

rebounder4ever
New Member


Date Joined Feb 2014
Total Posts : 10
   Posted 2/28/2014 10:30 AM (GMT -7)   
Just wondering if anyone has had their DNA checked: 23andme for the MTHFR mutations?

Problems with processing/detoxing toxins. Methylation is skewed. Vitamin B12 MUST be a certain type to help offset the myriad of problems and issues.

Simple blood test can determine the mutation. The gene goes out of whack under severe illness and/or stress.

I am currently researching this to help a family member. She has severe fatigue. Is positive with the a1298c heterzygous mutation. Hashimotos. PCOS. Epstein-Barr Virus positive. Gluten allergy,and food allergies. 28 years old. Doing my best to help her. :)

aysen
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 3/4/2014 4:59 AM (GMT -7)   
Hello, I have CFS for 5 years. I'm better in cold and rainy weather. Is there anybody like me? I take Valtrex for 5 months 3x1,but not works. Did you try Valtrex?

misty 12
Regular Member


Date Joined Sep 2012
Total Posts : 294
   Posted 3/10/2014 11:35 AM (GMT -7)   
What are your symptoms of CRS. Are you all ways tired? Do you have pain. Do you shake and tremble inside your body? Misty.

aysen
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 3/27/2014 7:15 AM (GMT -7)   
Hi misty, my symptom is only tiredness. Extreme fatigue. I have no pain. My jaw gets tired while eating.I'm forced to stand. It happens sometimes in talking. My daughter was sick and I had a sleepless night.After that night I could not get myself one month.
I'm getting better in cold weather and I wonder if anyone else feel like me.

Livvy123
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 4/8/2014 10:14 PM (GMT -7)   
Hi everyone,

I did take up my place in medicine, and although I'm finding it a bit tiring at times I'm managing the brunt of the pre-clinical work fine. I'm just hoping that the medical school will look kindly on me when it comes to the hospital years! I see that there is already someone else in the year above me who has taken a year out due to CFS so fingers crossed.

Just as a quick background, I have a lot of food allergies so I've been gluten free for a long time, and I've pretty perfectly balanced my diet so the foods I do eat pick up the nutritional slack from the dietary restrictions due to the other allergies. I'm eating a very healthy diet (I just fall apart if I eat bad, which I'm sure many of you are familiar with!), and am trying to get at least 8 hours of sleep a day, although it's not always possible with the early starts and a late teen's body clock...

rebounder4ever, that looks interesting about the genetic component, I'd be interested as well to hear if anyone has had their DNA tested for this!

lynxlovessugar, I really hope you continue on and do vet, it's horrible to feel like your career and future life is being controlled by this... I reckon the best thing to do is try out being gluten-free (trust me, it's not that bad!), and even if that doesn't work then see what the disability rules are around vet, you might be able to have lower-energy training and have seats etc. around so you don't have to stand :) In my opinion, if people with more serious disabilities (ie. those in wheelchairs) can get into things like vet and med then why shouldn't we? It's all a matter of providing help to people like us, accepting that we might need allowances to be made on the energy front, so I don't see why we should have to give up our dreams just because universities etc. won't give us the chance to sit down/fewer contact hours when we need it!

CFSNZ, thanks for the informative post, it's also nice to know that there are other people in my situation going through this (I know that there must be, but you never come across them in day to day life!). May I ask what you're currently doing in the way of study etc.?

On the whole what I'm finding is working the best is eating well, sleeping well, and never letting myself get to that stage of over-tired (which is the main reason I'm worried about clinical years, as I know that once I reach that stage I won't be able to work again for at least a week.. fatigue which you can't push through I think is the worst aspect of CFS, because no amount of mental strength can help you and other people tend to think that you're just lazy :/)

I really hope all of you continue to improve, it's a horrible thing to live with (especially with half the people around you saying you're lazy and the other half that it's all in your mind) but luckily it does improve with time. Makes me feel like it is an immune system problem, seeing as it's almost always triggered by an infection or vaccine and it improves as your immune system naturally winds down with age... also I note that a decently high number of us develop food allergies too. With any luck they'll find definitively what it's all about and give us a cure so we will no longer have to worry about how we're going to live our lives!
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