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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
- CMV, EBV
- Several EKG's
- Vitamin deficiency
- Brain CT and MRI
- Chest X-Rays
- Eye exam
- Hearing test
- Pap Smear
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:
- Sensitivity to loud noises and heat
- God awful brain fog
- 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!
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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!
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
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
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
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:
-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!
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 .
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?
'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.
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.
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!
This absolutely correct. I've read stories on some of the most severe cases the Mayo clinic has seen and they did beat it. It took them several years but they're back on their feet. It's a different cause for everyone but it absolutely can be beaten and overcome. It happens everyday. There's a website called Phoenix rising that has some of these stories. People have even had reversal of ALS. Never let anyone tell you that it can't be beaten.
Is there a difference between Epstein Barr and cfs ? May sound like a silly question but I realize that ebv causes mono and cfs ... but if you have the ebv virus are there better chances of recovery ? And do people have CFS without ebv ?
Yes, I have cfs from a car crash, my friend's partner after malaria, someone on her from pregnancy and giving birth, someone from a shoulder operation. I say many paths to the same destination. Whether any of those paths give more chance of recovery? I for one have no idea.
I picked ME after a minor throat operation, has anyone else picked up
this illness after being in hospital, or when they think their immune system
is low, many years on I have recovered but suffer panic / anxiety attacks
the medication for this created a type of psychosis,
you can end up taking larger doses which I believe makes the situation worse,
my job was very physical working long hours, which caused the need for throat op,
I try to keep my grown up children off such things as running marathons etc
as many with me/cfs seem to have been involved in demanding physical exertions
You can fight it head on. For example, your gut is a very important part of your body and directly relates to energy production and nutrients absorption, so taking a food allergy/intolerence test to find out if you have a bad intolerence to something and then removing this from your diet compeltely is a direct way to fight CFS/ME. You don't need to take a food allergy/intolerence test to know that humans aren't built to be able to drink milk past the age of about three, so someting like this would be a simple, but direct way of trying to help yourself.
There are coping strategies and these are great as you've said, but I can't just go on with my life being so pessamistic about potential recovery. There are direct ways to fight it, so I will and I think others should if they haven't already tried stuff like food allergy tests etc. I'm not saying go for it like you're on speed, because no one here has that kind of energy, but cutting foods from your diet is a simple thing that could make a lot of difference.
it's good to know that many people are recovering, gives hope.
It's not correct to say that 'humans aren't built to be able to drink milk past the age of three'. Unless you have a proven allergy or choose not to have dairy products as you don't wish to consume animal products then milk is an excellent drink to include in your diet as long as you stick to the lower fat versions. Milk is a good source of protein and also contains calcium, potassium, magnesium, B vitamins, vitamin D and various minerals which are all important to maintain energy levels in your body. I've found a natural healthy diet to be the most helpful.
Yes you are right, of course you can 'fight' ME and certainly the head-on dietry things you mention are examples.
I think I didn't express myself very well. Its the action verb 'fight' which I baulk at because it implies a rigid CBT or graded activity approach - well at least to me it does - and I've never had anything but failure from that kind of thing.
I also believe strongly that before you can begin to fight back whatever that means tactically, you have to acknowledge the illness. There has to be a coming to terms with it, and a sober assessment of its impact and likely impact. So if you unthinkingly decide well I'll just keep up activity x because its good for me, you go wrong. Activity x might have an impact you have not considered. It is this acknowledgement - more than just saying "I feel awful" because that's obvious - this step back and this recognition that for an unspecified time things are not going to be the same. That the illness will determine a lot of things.
Once a person has made this cognitive step of acceptance, they can then set about getting better. That is why I say its an outflanking concept. You accept the dictates, observe your patterns, and then begin to look for the gaps in the illnesses' battlefront, or ways you can avoid it, sidestep it, outflank it. Am I making any sense?
It makes sense but, it's also a bereavement process to get to acceptance don't you think? Disbelief, Denial, anger, bargaining all come before acceptance and cfs/me often doesn't play fair with us. Often giving us a glimpse of ourselves that we eagerly try to catch. The mind plays tricks or should I say, the mind responds how it always has, it hasn't "caught up" with the new data saying "do activity x and expect to have payback a, b, c and/or d!" It's a multi level process we're dealing with and if we were all "very active " people before, it's soo hard to pull back. There's so much for us to learn to get to acceptance and there's definitely something about being gentle with oneself and self care being number one but, sometimes that's difficult and also easy to sabotage. Like I think you said before, it's hard to not be able to be the dad who plays football with his son.
We have choices we just need To make sure as many of those choices as we can are looking at our self care and are gentle at the same time as acknowledging our limitations and accepting where we are right now. I think pushing through is our old memory not updating itself to accept that this isn't good for us right now.
It is correct to say that 'humans aren't built to be able to drink milk past the age of three'.
So.... the first thing that comes up on Google when I type "alternative nutrient drink to milk" is "Soy milk has almost as much protein as dairy milk, less fat, no cholesterol, and, since most soy milks are fortified, is a comparable source of calcium." There's your answer.
We're the only animal in the world that drinks another animals liquid (milk). Milk is indeed an excellent source of liquid, if you'd like to drink something that contains everything to guide you towards becoming a nice big mature cow, just like the calves that used to drink it.
Yes it is. Sometimes I express things in too definite a way when the real answer is more complex. I suppose I feel that offering recent sufferers insights into the twists and turns of this awful disease is less useful than a few rules of thumb. But then it comes across reductionist. So yes it takes a degree of experience of loss to even come to an initial acceptance and you go through the stages of grief. The sad thing is that is but the beginning of the bereavement process. I could write a novel about the time I feel I've lost, and it could well be an angry novel. I have found therapy useful, and since 04 have been in art therapy - just to learn to cope with the fresh losses as they come along eg last month I was too ill to go to my daughter's graduation.
30 years of gradual decline have forced me to become philosophical about my life. I am simply not filled with rage and despair any more, which probably baffles people. Not that I don't get depressed about the past and the future, I really do, and afraid too at times. But anger makes me more ill, whereas I have found calmness is healing. I assure you, however it has taken a big journey to get to the point of saying "The Lord is my Shepherd" and 'even if' rather than 'what if.'
I think I'll stick to the advice I got from the dietician at the hospital and my GP about my diet rather than looking up random things online. I'm not allergic to dairy so see no reason to eliminate it from my diet. If you are allergic to dairy then soya/rice and oat milk are good alternatives.
I thought the point of this forum was to be supportive and informative to others with the condition not make silly comments!!!
As far as I'm aware, I didn't make a silly comment. I agree that this forum is to be supportive and informative to others too, and listening to a dietician or doctor can help sometimes (especially a dietician), but if all you do is only ever use information from a doctor, then how can you ever expect to get better from CFS/ME? You've got to be a maverick with this and explore avenues yourself. If your doctor said you should start eating three plastic carrier bags every day for next five months, would you just blindly accept what they say?
Looking up random things online? The internet has its flaws, but it also has a great expanse of information and knowledge; it would be foolish to ignore. This forum for example has some great people on here.
Ooops! We seem to be going off topic here? originally Caroline asked for help and there were lots of helpful comments I feel, but what seems to be going on is more of a political debate on the pros and cons of milk consumption?
Offering our opinions is what the forums are about but they're not designed to say belittling things to people who don't agree with them. if giving up milk has helped you sockpim, then that is great and passing on that information is useful and I'm sure people are grateful for such contributions.
We're all here as we share this condition and I'm sure you'll agree it can be pretty unpleasant. Yes, people recover and some may have intolerance/allergy that isn't helping symptoms or is causing them.
I myself don't eat wheat or milk as I'm intolerant and haven't for 20 odd years but, have had cfs/me for nearly 6. I eat organic where I can. I hope this helps me and I hope to recover by not over doing things and by being gentle with myself and others as we could argue that our emotions also govern our symptoms, if we wanted to but, I believe we are holistic beings and no one thing will be a tick box solution.
So, eating as healthy as you can, drinking enough fluids, resting and gentle pacing, accepting that things aren't as you'd want them to be right now, being mindful of your triggers etc etc etc are surely a way forward as is checking with the gp that your symptoms aren't from something else similar to cfs/me are my thoughts on it.
I find it quite baffling that because I posted a comment about cows milk being a good source of protein and vitamins you somehow apparently take offense and think it is acceptable to post negative assumptions about me. I think your comment about eating plastic bags proves my point about the silly comments! Your comment about 'if all I ever do is use information from a doctor how can I expect to get better' is also totally untrue. I've gone from originally being bedbound to now being able to go for an hours walk, do yoga, go shopping and socialise with friends on a good day which to me is a significant improvement in my condition. The reason I'm now able to do this is largely due to my doctors advice and referrals onto other medical staff as well as paying for advice myself. By following various people's advice I have improved significantly from where I was to start with. My doctor also lent me his own copy of the book that Philsey recommended which you also seemed to take issue with. Following the advice in that book was the start of any improvement in my health.
I'm not going to waste any more energy on a pointless discussion. There are lots of nice helpful people on this forum and I'm sure they don't want to waste their energy reading childish nonsense! I hope you get the answers you are looking for in life and find something that helps your illness.
You misinterpreted me then... I'm not offended by people drinking cow's milk, it's just such a common food intolerance, it makes sense to remove it from your diet for several months to see if it helps. Almost no doctors have helped me in the time I've had this, so I guess I might feel a bit bitter about that, but there is so much one can do for themselves if they do their own research and experiments.
I wasn't disagreeing with Philsey as a whole, only that CFS/ME can be beaten. Your description of being able to do more is a good example of how it can be beaten. I don't know much about the book, but I'd say meditation has also helped me cope emotionally and physically with CFS/ME.
You don't think your last paragraph commanding that our discussion is now over is just a tad childish...?
I'm looking for advice for my problem's. Please use personal DM's for this kind of stuff. Thanks 😃
(I don't know what a DM is.) And I gave you some advice:
For example (5 weeks ago)
I agree with jeremy04366, I used to get bloated with wheat products for quite a while and then when I took a food allergy/intolerance test it came out that I had no problem with wheat, but had an intolerance to yeast, so I would suggest this as a possible avenue for you to look into as well."
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