Please help

Brain and nerves
1

Hi everyone! I am new to this website and this is my first post. It is going to be a long one, but I am hoping some people will take the time to read it and offer some advice. 

I'm a 19 year old female currently in my second year of college. For the past 6 months, I have been dealing with debilitating symptoms. I am going to start from the very beginning. 

Last week of my freshman year, (end of April 2018) I tested positive for Flu B. Ending my freshman year with the flu was the absolute worst timing. I was cramming for finals while also trying to be social. Being the idiot I am, 3 days after my diagnosis, I decided to go out drinking one night thinking I would be fine. I also consumed no water and very little food before this. I was fine drinking before I went home. I went home and smoked a little weed. (Side note, I smoked weed every single day before all of this started happening.) I went to bed with what felt like heartburn that night but figured it was just because the flu, the weed, or something benign. I went to bed with the thought I was just tired and sick since it was 4 AM and that I would be fine in the morning. Boy was I wrong. The whole thing escalated. It felt like there was an elephant sitting on my chest, heart beating out of control, dizzy, couldn't see straight. I've never felt so god awful in my whole life. I had my roommate drive me to urgent care where they gave me a chest x-ray.  They told me I was just dehydrated. (Made sense to me). Fast forward to 2 days later. It was the day I moved back home after the school year ended. I felt pretty much fine at this point compared to the other day. I had plans to hang out with all my friends that night. I smoked weed again thinking I'd be fine since a couple days had passed. I was wrong again. I immediately went to the bathroom and had severe diarrhea for 20 minutes and had the same symptoms I did the other day. I figured I was just dehydrated again but something in my gut was telling me something was wrong. I went to the ER that night where they just gave me an IV and some bloodwork which came back normal. The week after that was okay for the most part but then things started building up. I was dizzy all the time when standing, had horrible brain fog, palpitations, vision changes. I saw a total of 30 doctors over the summer to try and figure out what was wrong. Every single one of them told me it was anxiety. This made absolutely no sense to me because I had never once dealt with it in my life. Things got progressively worse as time went one. My GI tract was becoming affected. I also developed IBS and Gerd which I never dealt with before this all started happening. My sleep became severely impaired, I lost my appetite, and could barely leave the house. I work as a hostess during breaks where I stand for 6-7 hours without a break. I was always fine during this which was weird to me and doesn't make sense. I think I just pushed myself no matter how awful I felt since my job was the only thing I had going for me. I had many tests done including: 

- 3 CBC's 

- Lyme 

- CMV, EBV 

- Thyroid 

- Celiac 

- Several EKG's 

- Echo 

- Vitamin deficiency 

- Brain CT and MRI 

- Chest X-Rays 

- Eye exam 

- Hearing test 

- Pap Smear 

- Urinalysis 

all of these came back NORMAL. I even had a doctor tell me I was, "picture perfect healthy!" I felt completely defeated. As time went on my symptoms started adding up and got even worse. My symptoms included: 

- Dizziness 

- Vertigo 

- Sensitivity to loud noises and heat 

- God awful brain fog 

- Constipation 

- Nausea 

- Headaches 

- Palps 

- Chest pain 

- Extreme fatigue 

- Blurry vision 

- Pain sensitivity 

- Gerd and IBS 

- High heart rate upon sitting and standing 

- Random muscle twitches

I was eventually prescribed an SSRI and started seeing a therapist because every doctor was sick of seeing me me. Last week before school, I finally had a TTT done after persuading my PCP. Upon my results, it said, "Meets criteria for pots." I was so happy to finally have an answer. Except it wasn't that easy. My cardiologist, neurologist, and PCP all told me I definitely didn't have pots. But then why would the test say that? My cardiologist said I had some form of dysautonomia and that I needed to re-condition myself and that I would be back to normal. I have been at school for about a month now. My fatigue and brain fog is absolutely debilitating. I can sleep for 7 hours or I can sleep up to 12 and I will still so tired to even get out of bed. I used to go out and drink 4-5 nights a week and smoke every night and I haven't had a drink or smoked since April. I can't even go to the grocery store without feeling completely defeated. I'm also extremely sensitive to pain now. I stubbed my toe a few weeks ago and fainted! Absolutely terrifying. I have broken bones and gotten tattoos and have had no issues. Now the slightest amount of pain makes me feel like I'm gonna pass out. I have also developed migraines. I would get a headache maybe once a year before all of this. Any help at all would be greatly appreciated. I'm wondering if it could be CFS. I also seem to have a mild sore throat most of the time. My doctor's at home wouldn't test for an autoimmune disease because I showed no symptoms. I'm lucky if I leave my dorm most days. I don't think I ever needed an SSRI but now I am scared to stop taking it because I don't know how my body will react. (I take 25mg of Zoloft) I know I am supposed to be doing light exercise but I can't even get out of bed most days. Even showering becomes a huge struggle. My HR gets up to the 150's. I would be very grateful for any advice or ideas of what is going on with me. Thank you!

2

Hello Caroline.

Have you heard of a condition called Chronic Fatigue Syndrome or ME?. Your symptoms all fit into this diagnosis and my wife has this same condition which is why I kind of recognised some of your symptoms. 

visit this site:- https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/ and if anything else relates to your well being on this site I would definetly mention this to the doctor. Unfortunately if you do end up been diagnosed with this there is no cure.. just meds to ease the symptoms so I hope that I am wrong.

Please refrain from doing any exercise as this tends to make the symptoms worse!

Stu

3

Hi Caroline,

I can't really diagnose you, but alot of the symptoms are very CFS-like. Do you feel hot and cold often? Do you feel "tired and wired"? Tired and wired means being tired all day and then unable to sleep at night basically. I mainly responded to this post to offer you emotional support, as I know how you feel.

To give you a brief version of my story, I got CFS when I was 13 years old, (I'm 19 now) it was super hard to get the diagnosis, and it took about 2 years, the diagnosis finally came around after I was on medication for anxiety and depression, and having therapy for those too. I had alot of tests, I can't remember how many in total now 😂.

CFS cannot actually be diagnosed until you've been consistently unwell for 6 months (at least), so everyone with this illness has been super frustrated and asking themselves if they're crazy or not. I remember pushing myself to go to school, and getting sent home within 3 hours. My parents tried to make me "fight through it" but of course, with CFS if you ignore your body you get worse. I fought it for a few years before realising this, and it has made me super bad. I hardly leave the house because of it now, and need alot of help with every day life.

The best advice I can give to stop you from spiralling further is listen to your body no matter what. It doesn't matter what illness you have, this is advice to follow for sure. It can be super frustrating at our age especially to have this illness as you feel held back. I want to live a normal life but I'm registered disabled at this point, people feel like this at any age though.

I hope it's not CFS for you as it's a complicated condition that people haven't quite figured out how to cure properly yet.

I have another idea for you to ask your doctor about though, and it may give you hope:

My mum got sick too, she's in a similar situation to me now with very similar symptoms. She however was diagnosed by a neurologist to have chronic migraines with aura. This is actually a condition that can be medicated and eventually cured. Alot of people with CFS get misdiagnosed, and actually have these chronic migraines.

Thanks for reading my reply, and sorry if it's too long. I'm here if you ever need to talk to someone your own age about it, and please stay strong xx

-Katie

4

Caroline

Our hearts go out to you. Diagnosis of exclusion plus an almost exact description of CFS, so yes this is a correct analysis.

Get Darrel Yo Hen on Better Recovery from Viral Illnesses, it will explain the income/spending model of pacing.

Keep away from anything ennervating.

Stop going to the store, but get a friend to help, or get a taxi and get the cabbie to pick up your order.

Don't do the things you know are stupid!

This is coped from my post on how to do pacing:

PACING: 

-The first task of pacing is to understand the 'money' analogy.

Having M.E. is like playing Monopoly except that every time you pass go you get £20 not £200! 

The money analogy works like this. Every day you wake up with a certain percentage of the energy of you had when you were healthy. Let's call that your daily income. That daily income is not enough for you to afford doing all the things you were able to do.  If you use more energy than you receive you get into 'debt' and the result is payback: bad days. If you spend only as much as you earn your 'bank balance' of energy stays in the red and you can begin to eliminate the worst symptoms. 

The 2nd task of pacing is to keep a brief diary

With most sufferers, the symptoms of 'debt' may not show up immediately. The delay between exertion and symptoms is a classical sign of CFS/ME. And it is confusing, because the cause of a bad-day may not be obvious. You might have over-exerted yesterday or several days ago. Therefore you need to keep a very brief notebook to record what you do every day, along with a score of between 1-10 of how ill you feel. 10 is healthy, 1 is the worst. As you keep an accurate record of your life, and the symptoms you suffer, you will be able to look back and spot patterns. You can spot the activities that have caused you to feel worse and not do those things; you can also see what your own personal delay is. Some activities you can't avoid, but at least you will have the reassurance that your symptoms are not random, and like your finances, they can be brought under control. 

The 3rd task of pacing is to live within your means.

Living with M.E. can be like a cycle of wild spending followed by painful austerity; proper pacing will enable you to live within your means. With proper pacing you should find that you stop lurching from one energy crisis to another. If you balance exertion and rest properly you can be much more in control of your symptoms. Once your body is on a level it can start to recover. But don't be lulled into a false sense of security: step outside your limits and you will experience push-back. Living within your means you will get some of your life back.

Finally: learn to accept the lifestyle that M.E. imposes on you. 

CFS/ME can't be beaten: if you fight it, you will lose. Take a philosophical approach, however, and you can construct a new lifestyle. Begin to accept the measure of health you are given. I do a lot of listening during my hours of bed-rest. I have audio-read many books and got to know a load of music I would never have known if I had tried to continue living my old life. Learn the beauty of silence and contemplation, trees, sunlight, birdsong, and the calm things of life. You will enjoy some things others rarely if ever experience. Draw near to God and he will draw near to you!

 

5

So weird you mention the tired/wired thing. I am completely drained during the day but then all the sudden get random spurts of energy around 12-3 AM and I am completely unable to sleep. I also get hot and cold often. Freezing one second, hot the next. Been officially going on for 6 months now. So sorry you are going through all of this. I know how awful it is. I'm also 19 so if you ever want to talk to someone that completely gets it and is in the same boat, feel free to message. 

Thanks for your kind advice and response xx 

6

Also, do you know what triggered your CFS??

7

For me I have no clue, it's maybe hereditary, as my grandad had it too when he was younger. There was no real trigger for me aside from a UTI. I hope you recover soon xx

8

I have been to so many drs including the emergency and they didn’t even spot my Epstein Barr . I diagnosed myself as I knew from a blood test years ago that I did have the virus .

So demanded a specific test and that’s what I have . I’m now seeing and infectious disease dr who really knows his stuff .

He has sent me for more tests including the HVV 6 herpes test. 

I suggest you go to an infectious disease dr as my bloody work too from the hospital and my regular doctor came back great ... healthy . We have to be our own advocate . 

9

Hi Caroline,

It sounds like it could be cfs/me but they tend to wait for you to have symptoms for 6 months before saying that and yes, normal blood tests are expected! However, it could be post viral fatigue and I'm not sure why non of the people you have seen so far haven't suggested that?

It's easy to feel unheard with these conditions. But, stay determined! I have cfs/me and luckily have a supportive doctor who referred me to a specialist clinic at my request.

He did offer me anti depressants first as he said they helped some people with cfs/me but I declined because I'm not depressed. If you feel you're not anxious, go back to the doctor and say this.

Although Stu states there's no known cure, People do recover from psv and cfs/me. But, you have to be gentle on yourself. Explain at college how this is affecting you, tell your family and friends too.

Rest is imperative as is eating as well as you can. Drink well too so you don't dehydrate like you did. Rest and cutting back on activity and then gradually building back up, really gradually.

I know it's hard to pull back on the social aspect of college but, limit getting over stimulated too often.

Also, I know these symptoms are scary and I'm sure you wished they'd just go away! Try to be kind on yourself when you feel awful. Do nice things for yourself. If you like baths, relax in a bath or play music you like but turned lower.

Hope that helps

Beverley

10

I was originally diagnosed with CFS then later celiac. I found out that I had numerous food intolerances. It literally made my digestion issues like reflux, cramps, inflammation and bowel movement issues appear overnight out of the blue. My allergy test with skin was normal but found out that along with gluten, I had issues with dairy, wheat, soy and citrus acid. I've seen improvement by eating a Paleo diet . However I went through the gauntlet with testing before I tested positive on my iga TTG test (celiac) and discovered my intolerances through the process of elimination. I don't know if this applies to you but my symptoms were greatly similar to yours ...and I had normal vitamin testing results too, keep in mind though that a normal blood serum testing doesn't mean youre not defecient. Doctors don't often consider hair samples and ion testing but just because your blood is normal, doesn't mean your body's tissues aren't low. That's where hair analysis comes in. Good luck to you.

11

Thank you so much Beverley! I actually got diagnosed with post viral syndrome a couple weeks later after the flu symptoms ended but I was told PVS only lasts a week or two!

12

I actually thought I had Celiac! I got tested and it came back negative. Never had any of these issues before I got the flu, but I am hoping to see an allergist at some point in the future. I know you can develop allergies or intolerances at any time and that has always been something that has been in the back of my mind.

13

Yes ! I worked out for 5 months hard with The fatigue as thought it was all just hormones  . I stopped about a month ago and now feel worse ? Doesn’t make sense ....

14

I expect Julie Andrews to appear and start singing 

🤣

Let’s not beat around the bush ... this  is hell!

I’ve changed my life to deal with this illness and it’s bloody depressing ! The mental stuff is the worst ... depression anxiety . 

And there’s only so many hours you can lie down don’t care how many tv channels audio books you have .

I’m doing this ALL alone with a cat and has been the worst time of my life ! 

So I want to pass  go and get the $200 as soon as possible ! We know the pacing is important and I adhere to that ... absolutely no fun zone.

We are human though and to have to ‘get used’ to this is like a prison sentence with no release date .

15

Mmm, I'm in the UK and here my friend was told its PVS until 3/6 months and then if you still have symptoms it's seen as cfs/me. I know having a name to it doesn't change anything but, I went 18 months not knowing that I had cfs/me. I was in pain and exhausted though as mine was brought on non virally. My symptoms were seen as normal? At 18 months I felt surely I ought to be recovered? I'd had physio and psychotherapy but I was still far from feeling well enough.

I know how hard it can feel to be heard with this. Be determined to get answers. Tell Drs you suspect cfs/me and ask for a referral to your nearest infectious diseases unit.

Beverley

16

Dear Lori,

I am sorry as I see I have offended you. The last person I sent the material about pacing and money analogy to said it was the most helpful thing he had ever heard and was a lightbulb moment for him. Yes this illness is hell, but there again someone weighed in on me on another occasion that my comments sounded discouraging as if no-one ever got better. Please therefore don't be offended, especially as it wasn't you I sent this message to. It is difficult to get the balance right between offering a dangerously optimistic view with a dangerously pessimistic one, and if you sit in the middle you aren't being honest either.

As for what you said about yourself, it is deja vu. I have myself had M.E. since 1996, possibly since childhood, though because it was of the gradual decline type it was not diagnosed till 2001. The entire period of the best years of my working married and family life are gone, and I am now 'severe', whereas in 2001 it was only 'moderate.' I was made redundant in 2002. I have been reduced to tears at appeals for benefits, I have to shell out continually for pension reviews because its a fluctuating illness etc. I have had everything the NHS can throw at me and I am worse. My wife didn't believe I was ill, and so we are now divorced, I am trying to live on my own and I had to leave our three cats ALL with her incidentally. Both my children are grown up with their entire childhoods having had a disabled dad who had to say no, I can't do that, wno I can't kick a ball round. There is not a photo of my 18yr old son I can look at which does not bring memories of the physical pain and crushing fatigue and the specific symptoms of my body at that specific time,  I could go on to list all the horrible things that my body does to me, but I will leave it to your imagination.

So what is your problem, Lori? If you think I sound like Julie Andrews is just about to burst over the hilltop , then in view of my history that is actually a compliment. Maybe you don't like me mentioning God, but again, in view of the suffering I have undergone perhaps that is worth a moment's reflection.

You sound deeply embittered, and that I can understand. Neither of us have a get of jail card, and both of our lives have been ruined and we both face a bleak future. Maybe what bugs you is that I seem to have found a philosophy - a modus vivendi - with which to live through the hell. But please don't think I am waltzing on some cloud somewhere in make-believe land. It hurts for me too!

However, morale is a very important issue with this disease, and I have not read anywhere on his website that offering insights into what we may have discovered regarding morale is forbidden?

Philip

Essex

UK

17

'CFS/ME can't be beaten: if you fight it, you will lose.'

This is incorrect... they can be beaten, I just haven't found the answer  for me yet (it's been 11 years for me so far). I know one person who has gotten better from CFS/ME and one that has gotten better from Fibromyalgia, so it is possible. But as soon as you think it can't be beaten, it'll just become more overwhelming and make your symptoms worse.

18

That's a good idea, just remember a negative test on food allergies doesn't mean you don't have food intolerances. I found this out the hard way. My doctor had to argue with the allergist about this. It helped my reflux and stopped my indigestion . It's been tough figuring these out but it's worth the trouble.

19

Hi guys again,

I agree that there are people who recover! And thus, I'm hopeful for a future without this condition for myself and others.

My friend's partner had it for 10 years and doesn't have it now and is a personal trainer (that is from bedbound).... my next door neighbour's neice had it 2 years and doesn't anymore. Another student on a course I was on had 'mild' cfs for a year and ok now and other people I have heard about.

The truth is: we don't know our outcomes all we know is that resting, pacing, eating as well as we can etc etc etc will help. For some aloe vera helps, some anti depressants, some acupuncture and again etc etc etc.

I'm a single mum with 4 children and also have had my share of disappointment in not being able to do things with them other parents can but, I talk to them about it and do things that I can do with them.

It's a difficult condition at times for sure but, it does have people who recover is my point and hope is important. Yesterday I spent the day in immense pain and under a quilt most of the day on the settee. Yes it's annoying but, it was payback for going to see a play with my sen daughter for her GCSE. Now I am resting as much as I can today. What I want to start doing, is rest the day before in preparation rather than after in payback.

Lets be gentle with ourselves but also to each other on here as we're all here for the same condition.

Beverley

20

I have the book by Darrel Yo Hen you are talking about think it makes a lot of sense and is an excellent book. Another really good one is Fighting Fatigue by Sue Pemberton and Catherine Berry which gives you good coping strategies. I keep a diary every day and keep a score out of 10 of how I'm feeling and find it really useful. I think some people can recover from this illness and other can't yet. I've had it for more than 20 years and tried everything possible to help myself but although I've seen some improvement some of the time I've never recovered. It's important to try and stay positive and focus on what you can do rather than what you can't do and be happy with the simple things in life!