Not yet diagnosed properly

Hi Path,

So sorry to hear what a terrible time you've been going through....I just wish this horrible thing would cease and you would feel like your old self again. I do want to reassure that even though it's been 15 months, you can and still will get better I truly believe that. After the end of Year 2 since I got the virus I felt a big difference even from the end of Year 1, when only I'd started to feel a little better. So your body is still recovering. Just wish it wasn't so aggressive and the weight management was easier, sometimes amino acids can be good for helping with a more healthy weight and making sure you don't lose any more tone and build things up slowly again.

I know you must be so weary....I know the feeling of feeling worn down and beaten and not feeling like able to keep going.....I do believe God is there and there is still hope always because of that, even in these hard times. I believe God will bring healing in your life Path, even though it doesn't feel that way now, so hang in there I have a strong belief in that and don't worry if you're not feeling strong enough to feel that way right now, someone else feels it for you.

Rosie that's really good to hear things have been better for you, what was the treatment that has been working? Maybe it could be something for others on here to try!

Take care and believing in full recovery for EVERYONE reading this message.

Craig

Hi Path,

Your symptoms sound just like my daughters, she has had moments where her mental clarity is better, Have you had moments like this? She is at 14 months.

My cognitive functions improved somewhat, I don't find myself as often struggling to find my words or being in a fog, but the physical tiredness is the same or sometimes worse.

I also have a feeling in my chest, cannot explain it. I can breath normally, breathing tests are ok and I can fill my lungs properly, but there's a feeling of discomfort in my chest, like a fullness, weakness, like I have to make an effort to breathe. It's really something that cannot be described using language, there aren't words for it. Sometimes I feel it worse than normal. I have to be more careful and see if it's related with eating too much, because I did no  gluten for about 2 months, no sugars etc and didn't help.

Is your daughter finding it hard to put on weight? I lost a lot of weight in the first months and now I struggle to at least stay the same, even though I still lose a bit of weight when I have a bad period.

Oh, and I still have unrefreshing sleep and a lot of days with no sleep at all. Does she have this?

Yes, she has the weight issue and the unrefreshing sleep, mornings have always been the worst time for both of us. I had that weird chest feeling for a long time and occasionally still have it when I am tired.

I went through the exact same thing. We are about the same as far as months go. I have worked through most of the illness. It was a lot easier to work in the beginning. Like you said, it felt like just having the flu. I also hit a wall where I could not go anymore. The fatigue was so bad I just wanted everything to end. I took 3 weeks off of work and still didn’t feel any better. Sore muscles, brain fog, blurring vision, etc. I went to my doctor and cried and he said it takes time, maybe 2 -3 years. As time has passed i don’t feel as bad in the morning when I get up for work. My vision is starting to show improvements also. I still have to rest when I can, but as of right now I’m seeing some improvements. August- November was terrible!!! Craig and everyone on this site has saved my existence. I have seen a lot of months where I could not go on like this, but it’s actually starting to ease up a little. Some hope is better than no hope. Don’t give up. I believe that the day will come when you will start to notice the weight of this ease up. I still have a long way to go, but some improvements is better than none 

Hey everyone,

Really glad to hear things are a bit more settled Brent and Mono, remember it takes time and recovery is still happening, bit by bit, and in another few months you will look back and said I'm actually a lot better than I was at that point when I started to feel a little better, etc. I really do hope and believe that will be the case - hang in there! Thanks for the kind comments Brent, taking the time to do that when you've been feeling so unwell yourself says so much about your character!

Path, remember things will keep improving too. The chest pain I remember having that in the glands in my chest and area and definitely that can feel like it's interfering or affecting with your normal breathing because everything is so sore and bashed up. Just hoping and believing it will all settle down soon, hang in there!

Keeping on believing for everyone's recovery in 2018 - without any doubt and especially for you Brent, Mono, Path, Caroline, Nicky, Rosie, Shabby, Christy and everyone else

Craig

Thanks Craig and everyone.  We will get there!! The Treatment I did isn’t called the Lightning Process - it use some neuroplasticity to help the body recover from post viral fatigue or cfs. Not a cheap option but has made a big difference to me so well worth it. I had brain fog, swollen glands, exhaustion, weakness, blurry vision, nausea, sickness, racing heart, migraines etc etc for reference. 

Sending healthy wishes

Rosie

Oh that's interesting Rosie, I've never heard of that treatment, I'm glad it's making a real difference to you. As you say, if you are able to guarantee it will help, paying more money is something I think most people would do if they are able to - so definitely something worth thinking about or looking into for folks.

Craig

Hello! What is the treatment about?

I've been to my GP and told her I'm losing weight and she just said to eat more. I told her I eat normally and she just didn't say anything. She's always gone to those international conferences. What on earth are they teaching them there? They don't seem to have a clue about anything. She seems to lack basic knowledge and I'm not talking about the CF stuff, just generally.

Then went to the endocrinologist (I've got my thiroid removed a month ago) and showed her the ospeoporosis diagnosis and test and she just shredded the papers, she said that it was impossible a male at my age to have that, the machine must have been broken and those who supervised the test were mad for writing that. But I'm low on iron too and my cholesterol is nearly half it was before (I know it's a good thing, but not when not done on purpose), my blood calcium is high but my bones get weaker and joints hurt, there's some substances that help bind calcium to bone and I cannot produce/absorb them, I guess. They don't have a clue and seem nervous and don't like to be puzzled, they just know a set of diagnostics and like to write those down and nothing that is not exactly like in the medicine book that they've read.

I'll try some hydrochloric acid and enzymes to see if digestion improves and I can gain some weight and get some needed substances into my body. I said I was done with the supplements since none worked, but here I go again... This is a desperate condition and always makes you try anything. And they often say it's depression. I've seen depressed people, they don't tend to try much, even if they could run a marathon. If I could walk and run without fatigue and palpitations etc, oh, I'd be at work and in the city and doing things, not lying around in my room.

Hi Path2nowhere,

That sounds frustrating with doctors. I’ve found that giving them numbers and facts can go down better sometimes than describing symptoms so can you keep a record of how many calories you are eating and your weight over time. I kept telling doctors I couldn’t eat at all for a while but until they had the statistics on how much weight how quickly they did nothing.

I’m guessing your thyroid was removed due to being overactive, which can make you lose weight and also can give you low bone density (osteoporosis). Do you know if your thyroid levels are at the right level now? Are they going to redo the bone scan if they think it was faulty? I got anaemia after my thyroid removed too and they should prescribe you iron for that if your levels are low.  These things all need to be monitored by doctors so they can’t just give you the brush-off like they do with CFS or you need to request 2nd opinion or our complaint in. Not that we should have to fight for it but it’s important these things are looked at so you can recover.

Also, Lightning Process has a website if you want to google what that is for CFS, but until your thyroid, iron etc are levelled out those are top priorities for getting better.

http://forums.phoenixrising.me/index.php?threads/if-people-do-recover-from-post-viral-fatigue-syndrome-without-cfs-then-why-cant-i-find-any.51180/

Hey! Don’t give up. I have terrible fatigue too.. I know how awful and overwhelming it is. I know people don’t seem to “get” what FATIGUE is. I know it feels like you’ve been robbed. 

Please YouTube “I recovered from CFS” 

And try to find recovery stories online. 

There is an Olympic athlete who had CFS for a year and a half and he overcame it. Many success stories. Unfortunately some take longer. You’ve already been through it a long time.. maybe you’re one of those people who feels better at around 2 years. If so, you’re almost there! Please read positive stories... most people also share their “turning point” methods. A lot of tapping and some “rewiring the brain” books and programs. 

Wishing you energy, and continued recovery. 

I agree! Recovery stories are so helpful. There’s a book called ‘CFS fifty recovery stories’ that i would reccommend too. By Alexandra Barton.

Hi Path,

I really feel your pain with this, especially regarding the struggles about doctors and people who don't understand what it's like to go through it. They don't see the desperation and that someone just needs help and reassurance and understanding, because the virus really affects everything from physically to emotionally to mentally.

I'm still thinking about you and rooting for you, and refuse to believe anything other than you will definitely make a full recovery still - I really truly and strongly believe that God will bring healing to you Path, just take things slowly and be kind to yourself at this time - it's okay to accept things aren't perfect today but remember they will be much much better soon.

Craig

One book that helped me was one called 'Viruses, Allergies and the Immune System' by J a n    d e   V r i e s   (spelling it out as have had problems with messages being blocked with this in the past for some reason)

In fact, my thyroid was functioning normally, my hormones were perfect, right in the middle of the normal range, but they've seen a nodule and decided to take it out after a biopsy that had the result of possibly being malignant (I bet it wasn't, I'll get the surgery report in 2 weeks).

My iron is right above the low normal limit, as is testosterone. I guess the body is in a catabolic state, low hormones, slow digestion, body mass loss (or stabilisation in the better periods, but never increasing).

The best bet, from what I've read (and I've read a lot, hundreds if not thousands of articles and scientific papers and trials) is to just wait and hope for the body to get out of this state, rest, eat normally, exercise only mildly, remove stress and be positive. Nothing really miraculous you can do and it will take from a few weeks or months up to...never.

Hi Path,

ive just started watching the videos from cfsunravelled. It's interesting so far....( Myth 1. You don't recover.) we can over come what this illness brings with it. I've just bought the book, so I'll start reading it tonight. 

Of course recovery is possible. The fact is when you are ill it's a lot more likely to go on the web, share stories, search for support etc. When you feel perfect, you just go on with your life and do things, you don't feel the need to share your story as you can use the time to have fun. Craig is an exception in this regard. That's why there are mostly suffering people on forums.

Yes I agree CFS health do good, encouraging videos.  The website CFS unravelled has good recovery story videos to learn from. Optimum health clinic also do some good free videos.  There is another website by someone called Bruce something from Stanford about his recovery.  There are also a lot of negative sites and people out there to be wary of I think as they just seem to be angry and believe nothing works or worry about one rare medical possibility after another where actually the worry about it is keeping the cycle of stress and illness going . Unless we believe we will recover I don’t think we will have the determination to keep working on it so we finally make it. I think it is important to find out what issues might have contributed in your life in addition to the glandular fever eg for me chronic stress, overwork and trauma so having help with that side of things is important to me.  

Also Craig is your back amy better now? Hope so!

Yes, that's so true path, hopefully one day we will all be having too much fun to even think about this! 

Keep us posted on the results of your thyroid, will be interesting to find out.

i am doing loads better than I was.....still keep plodding onwards and upwards!!

Do you have a CFS diagnostic? In my country is hard as hell to obtain it, I haven't even tried, since my GP doesn't even know what it is. We have paid leave here, but after the thyroid medical leave expires, I can no longer justify myself as long as tests turn out ok or almost ok. They need some classic disease to be able to give me a leave.

What country are you in path? I have a diagnosis but just from a GP to allow me to access CFS service.  Cfs service varies by area but is non medical staff in mine so GP has to do blood tests etc to rule out other conditions.

I'm in Romania. There are less people with CFS here and some of the doctors vaguely know about it (in its post viral form). No qualified staff to tend to such problems. Maybe there's a postviral fatigue diagnostic choice in the computer data base, but even for that you have to fight and GP's don't really know about it unless they search specifically, and they really don't like being told what to diagnose.

On the other hand, this is a cursed problem... I mean, anybody can claim they have fatigue and feel sick, and this makes it really hard for us to be taken seriously.

Haven't done anything I like for over a year, no photography, no travelling, no walks, only work, rest, hospital and tests, internet and around the house, doing the little chores that I can manage doing.

I had a kid call an ambulance in the classroom while teaching, I could barely speak, I was collapsing and around here the ambulance calls are not really snappy, they ask and inquire and stuff and I really didn't feel like having a discussion, explaining that I haven't drank too much coffee, describing the problem in detail and whatever else they use to ask, I just wanted the ambulance.

I've read in some places that this CFS is worse than most cancers in terms of symptoms and also most HIV people have it much better if they take treatment and avoid infections. Just that, at least here, doctors dismiss you really easily with CFS. When in hospital the nurses tended to the other patients, encouraging them etc, while I was nagged, mocked for being weak and complaining for no reason.

Hey!

I just wanted to write to you because I too have a thyroid nodule.. I wonder if this somehow affects our thyroid functioning making us feel sick and tired??? Had a biopsy on mine it was benign.. but I am curious if having a nodule there maybe over or under stimulates the thyroid? 

Hmmm

Hi Path,

I just remember how hard it was when I went through it myself and could really have done with a forum like this then, because all I remember was feeling frightened and worried about what I was reading on the internet about the virus - don't believe all these scare stories, you are definitely right that recovery is not just possible but probable for most people I believe.

Craig

Oh dear I’m sorry you’ve had these experiences. It is great you’re mostly managing work. I’ve had some horrific treatment by doctors too where they just think it’s hypochondria because they can’t see what’s wrong through tests so they give you a really, really hard time. Even if you can’t walk down the stairs or eat or see properly or anything. But I guess we can’t change that so we have to just focus on the stuff we can do for ourselves now and in the future to get better. 

I’ve also had toxic multi modular goitre of thyroid and a microcarcinoma. I think it’s to do with the HPA axis thyroid stuff really exhausts the body systems by hopefully we are now all treated and on the way up x

Vancityraincity, if the thyroid hormone tests are ok, it can't give symptoms. Even malignant ones don't give symptoms from all accounts, unless they spread a lot and become carcinomas and enter lymph and other areas.

I've had mine taken out out of desperation, beliving I can somehow get better and it could be the cause, although all doctors and internet accounts said it has nothing to do with my problems as long as blood tests come out ok. Do the blood tests, TSH, FT3, FT4. If they turn out ok, it has nothing to do with your symptoms.

Craig, thanks for the encouragements. It's not the virus that I fear, since the blood tests how it cleared from the first weeks already, but the auto-immune response aftermath and the sickness state from which the body seems so hard to be able to get out of.

Hi Rosie,

Thanks for asking about my back, no still having problems unfortunately. Your message about believing you will get better is so important, it's an area I'm not doing so well in at the moment and sometimes you just feel a bit down trodden and beaten up by everything. I really need to keep believing in my recovery I know, thanks for your words of encouragement.

Really thinking about you too Rosie and still fully believing in your recovery!

Craig

Craig you will defintely get better with your back, I know it! Really sorry to hear it is taking a long time, hope you are getting the opportunity to try lots of nurturing and supportive treatments - it sounds like you definitely deserve them. Sending you healing and healthy wishes xx

Thank you so much for those kind words Rosie, I really appreciate them as have been struggling to cope with my situation lately and just finding it hard to make progress. Just to have you say that you believe I will get better helps, thanks so much and sending much good will and blessings your way.

Really hoping that things are progressing for you Rosie, I know you've been through such an awful time too with this virus and just want you to know I'm thinking about you and still believing your full recovery and active lifestyle again - hang in there!

Craig