4 Health Issues — Doctors Cannot Help Me

[Zora]

Hi Guys,

so I have not only one (Tinnitus) but 4 main health issues. And doctors cant help me with any of them.

I guess I just need to let off a little steam, and maybe some of you have a same experience. It is easier if there is "only" Tinnitus, but I guess one problem never comes alone.

1.Problem: Derealization. This is an alteration in the perception of the external world so that it seems unreal. Ok so that sucks. I have this BS since one year and its not getting better. I am doing CBT since 6 months. This "Problem" sucks but I can handle it, as it is not holding me back to do stuff (just concentration problems and anxiety)

2. Problem. Feet pain. I have pain in my feet since almost 1 year. I have been to several doctors. orthopaedic specialist, internist and neurologist. None of them can help me.(had MRTs done twice)
So it hurts. 24/7. . and the docs cant help me..if I only knew what it is....

3. Problem. Tinnitus - yup, we all know that one! that nice, lovely ringing in the ears. who wouldnt want to have that?

4. Problem. Chronic fatigue after infectious mononucleosis/kissing disease. I had the kissing disease 7 months ago for 2,5 weeks. fever, fatigue, weakness and tonsillitis. But that passed. What stayed is the chronic fatigue. I sleep 12-13 hours every day. If I dont Im tired, if I do I am tired. its really exhausting, because its been like that the past 7 months. i will start uni soon and I dont know what to do. The doctors cant hlp me. They say it can last up to years, some say 18 months. No one knows (hmm...didnt I hear that one before)


So I am just really fed up with these issues. Sorry but I just needed to let out steam.
espescially the chronic fatigue is wearing me down. Please if anyone knows what I could do against this...this is worse than T at the moment. there are so many smart people on this platform...maybe someone can help me?

every Problems sucks, but is handable. together they are tough...

 

[Rosie_Rose]

@Zora - I completely understand your frustration. Chronic fatigue syndrome (CFS) is not widely recognized here in the states. I must have seen about 5 doctors before I found one who was familiar and accepting of this syndrome. Here's the good news....he cured me!!! There is a treatment here called the Meyers cocktail. It was invented by John Meyers (a Baltimore physician). It is given in an IV infusion and consists of only vitamins and minerals. Look it up when you get the chance. Perhaps you can find a doctor who is willing to give you the infusions. Please let me know how you are faring with this. Don't give up hope - be persistent!

As far as the tinnitus - keep your chin up. I think once you're cured of the CFS you can better cope with the T. You're in good company!

The feet pain - it might go away when the CFS is conquered. One thing at a time. Baby steps. Baby steps.

 

[Zora]

@Rosie_Rose omg thank you so much! Even Only for replying.
It (CFS) is wearing me down so much! Its good to know that someone understands and has been through the same!! Bc Im not a lazy person! People might think that bc I sleep so much, but its very tough to be sleeping and tired all the time.
Did you get it after the kissing disease as well? How long have you had CFS for? Awsome to hear that you got cured!!!
Yes totally. You understand me, thank you. Its true if I can be cured of the CFS it will be easier to handle T!
I will talk to my doc for sure! i will let you know!

 

[Rosie_Rose]

@Zora - I think my CFS was brought on by stress from work. It was very bad. I lost 20 lbs because I was too tired to eat. I couldn't imagine being THAT tired at this point in my life! I love cooking - I love eating!

Anyway - I had CFS for about 1-1/2+ yrs. You can beat this with the right help!!

 

[Rosie_Rose]

I forgot to say - once I started treatment I was better in about 8 weeks with noticeable improvements after the FIRST treatment!!!

 

[Zora]

@Rosie_Rose you got 1 injection per week?

 

[Rosie_Rose]

I started off with 2 vitamin infusions a week, as I started feeling better the doctor switched it to 1 per week. Mostly I stayed with 2 infusions each week.

 

[linearb]

what we call "CFS" in the states is a little different than what @Zora is describing, because as far as I know, it's not that unusual for Mono to create profound tiredness for 6-18 months following the illness... so your doctors are right on that one. "CFS" may not be a single condition, it may often relate to viral stuff, and mono might be one cause... on the other hand, most people who get mono, don't have protracted tiredness (just like most people with hearing loss don't get tinnitus... hmm!)

This might be worth reading: http://jid.oxfordjournals.org/content/196/1/4.full

Sorry you're having such a rough time; the good news is I've communicated with people in similar situations who have improved a lot over time, it's just not fast or easy.

 

[dragonjax]

I don't have chronic fatigue, although last year I was diagnosed with borderline adrenal fatigue.

I do, however, have foot pain. It's arthritis and bone spurs at the joint of my big left toe, which can make even walking uncomfortable sometimes, and taekwondo painful. Not all the time, which is a relief. But enough for it to get in the way.

But I also have chronic Raynaud's, which is vascular spasms in the fingers and toes. Manageable, but frustrating. Sometimes painful. And I get episodes every day. (Even had one doctor who didn't believe me when I said it was every day.)

And, of course, there's the chronic tinnitus. I've had it in my left ear without stopping since August 2012. And just over the past month or so, it happens in my right ear too. (Like right now, as I'm typing this, it's so damn loud in both ears, at different frequencies. Someone suggested to me that stress can trigger the tinnitus. I think I'm stressed **because** of the tinnitus.)

All of this is just to say that while I don't have any answers for you, I do sympathize. Huge hugs from Upstate New York!

 

[Karen]

Hi, @dragonjax

I noticed in your post that you said you had been diagnosed with borderline adrenal fatigue. Well, when my tinnitus first worsened (6 years ago), I suffered from a lot of side issues, too, including adrenal fatigue. It was really bad at first -- so bad that I couldn't get through a whole work day without feeling horrible (tired, weak, shaky, nervous, etc). I would go days on end when it felt like my head wouldn't clear -- hard to explain except when you're experiencing it. And I would get very tired after just performing small tasks, yet when I tried to sleep at night, it was almost impossible. That, plus tinnitus and pulsatile tinnitus, and I was at my wit's end!

Now, six years later, I'm pretty much over the adrenal fatigue. I still have both tinnitus and pulsatile tinnitus, but I am living with them well enough. I don't wish adrenal fatigue on anyone, and I hope you are doing better now. For me, following a good diet, taking extra vitamin C, exercising moderately, getting rest when tired, taking my thyroid medicine regularly, and taking supplements such as coconut oil, seemed to help. Also, I bought a book about adrenal fatigue that my naturopathic doctor recommended, "Adrenal Fatigue, the 21st Century Stress Syndrome". It helps to understand the condition, its symptoms, and ways you can help yourself toward recovery.

Best wishes,
Karen

 

[dragonjax]

Hi, @Karen --

Thanks so much for sharing! I need to get back to doing the things that my functional medicine practitioner suggested regarding the adrenal fatigue -- including stopping the caffeine and alcohol. (Just typing that makes me tired. ) I'll be sure to check out the book you recommended. Thanks again!

 

[Zora]

@dragonjax sounds painful.
I have pain in my feet 24/7. At least you know what it is and it might be a little treatebale?
the doctors dont know why I have pain. I believe you are older because you said you have artrithis?
well, I am only 20 years old!! all these issues, none of my friends have!
and whats even worse is that you cannot SEE these problems.

Fucking sucks!!!!

 

[undecided]

@Zora

This might be old news for you but have you tried Gabapentin at any time - and at what dosage?

 

[dragonjax]

@dragonjax sounds painful.
I have pain in my feet 24/7. At least you know what it is and it might be a little treatebale?
the doctors dont know why I have pain. I believe you are older because you said you have artrithis?
well, I am only 20 years old!! all these issues, none of my friends have!
and whats even worse is that you cannot SEE these problems.

Fucking sucks!!!!

I'm 45 - older than 20, but too young for arthritis (in my opinion, anyway).

Have you looked into the possibility of fibromyalgia?

 

[Zora]

@undecided no I havent, what would that be good for?
@dragonjax oh. Yes. 45 is definitely too young for arthritis.
I now read about fibromyalgia on wikipedia. Sounds awful why the FUCK do I have to get all of this bullshit together (((
I dont know if I have this because i have been to GPs, then 2 different orthopaedics, then an internist and then a neurologist. Shouldnt they have told me if I have fibromyalgia?
-.- I am so tired of all these issues.

 

[undecided]

@Zora Gabapentin could give you some relief on the tinnitus + feet pain issues. I'm surprised that none of your docs suggested this to you, however this is just a guess on my part and I have a very small idea of the troubles you are dealing with.

Also, the chronic fatigue thing. I imagine you've had a full thyroid exam (ultrasound + TSH + T3 + T4 + FT4 + vitamin D levels).

 

[dragonjax]

@Zora -- a good friend of mine has firbo. And while it's not easy, she lives a full life. Hell, she's a first degree black belt in tae kwon do and regularly kicks my ass in sparring.

 

[Zora]

@undecided I looked it up in the internet but I dont have many symptoms of thyroid probelms. but the docs didnt do an exam. i had a big blood test made though, but only with good results. But thank you for your idea.

@dragonjax good to hear, but I doubtthat I have fibro because it happened from 1 day ro the next one over night.

I am really depressed atm. i am taking st jons wort (natural AD). This fucking sucks.

 

[mrdude1234]

Any updates Zora?

 

[Zora]

@mrdude1234 hey

1. problem. derealization is still going very very strong. I cannot calm it down. Sucks to feel unreal

2. Tinnitus. Still there, still 2/10. Still making me sad (-> fueling the DR)

3. Foot pain. Still there. went to see another doctor. He didnt know how to help me. I am really pissed off by this problem, bc not being able to stand or walk without pain sucks alot!!
4. Chronic fatigue. I am happy about that one becauss its not that strong anymore. I sleep max 9/10 hours a night, but thats perfeclty fine

why are you asking? do you have experienced any of these problems?

 

[just1morething]

@mrdude1234 hey

1. problem. derealization is still going very very strong. I cannot calm it down. Sucks to feel unreal

2. Tinnitus. Still there, still 2/10. Still making me sad (-> fueling the DR)

3. Foot pain. Still there. went to see another doctor. He didnt know how to help me. I am really pissed off by this problem, bc not being able to stand or walk without pain sucks alot!!
4. Chronic fatigue. I am happy about that one becauss its not that strong anymore. I sleep max 9/10 hours a night, but thats perfeclty fine

why are you asking? do you have experienced any of these problems?

You seem too young to have neuropathy and also too young to have lower back spinal compression problems that can cause problems in your feet possibly. Very frustrating for you I'm sure.

 

[dan]

Since when can doctors help with anything they can't solve with an antibiotic?

 

[Laurie1961]

Hi Zora--WOW....I had left FOOT pain about the same time I got tinnitus and blurred vision. First I was told I had a Morton's Neuroma. Then I was told by another doctor it was caused by anxiety. Admittedly I was anxious, full of pain and tired and couldn't function to do anything. When I was working with it, after work all I could do was go to bed and sleep for the next day. I finally gave up trying. I still can only wear flat shoes or go barefoot...it is like a seering burn near the smaller toes.
Chronic pain of my bones was been blamed by doctors on my history of a bone disease that broke my hip at 21. I don't believe that is the case because I know how many years I went without pain before it returned. It's not the same kind of pain. But, since there's no cure for my disease, I'm supposed to learn to live with pain, just like the tinnitus--......ha ha. The doctor that told me I had Fibro myalgia got an earful (that dx is pain for no reason). Stay hopeful that we will find a cause for all of these symptoms--...I feel very certain that the symptoms are related. Maybe as a group we will be able to figure it out the cause, hence the cure for ourselves. Hope!

 

[just1morething]

@Laurie1961, I have burning/stinging toes, but I'm sure mine are related to L4-L5 spondylolisthesis (A spinal disorder in which a bone (vertebra) slips forward onto the bone below it) It is sometimes very difficult to get the right diagnosis as I found out.

Spondylolisthesis. With this low back condition, a vertebra slips over the next vertebra, thus compromising the spine segment and potentially leading to a pinched nerve that can cause pain to travel down the leg and into the foot. Treatments for spondylolisthesis may include nonsurgical or surgical approaches

 

[Laurie1961]

Hi Just1morething-- Interesting....a year before I started having bone pain, I had numb, left leg and arm. My leg wouldn't even lift. The dx was radioculanopathy of L4-L5 by a neurologist. He explained that the holes of the vertebrae filled with bone. The doc who made the referral said it could possibly be MS and the neuro was going to rule that out. It was the oddest appt with the neuro---he used tuning forks and pins. The drug I was given didn't agree with my spine....so I went to a chiropractor.He said the neuro was full of bull but his treatment was too painful...so finally I treated myself with Advil constantly --it took 2- 3 mos for sensation and full control to come back. Long before that, just before my hip broke I was incorrectly dx'd with sciatica...it felt like your description sounds like. I'm gonna look it up.

 

[hartje5]

I really feel for you. T in itself is bad enough. For me the past four years have been no fun either. it started in...

2013: herniated disk in my lower back, when they where about to operate on that they found out I had
2014: persistent atrium fibrillation, when they tried to zap my heart back into a sinus rhythm they found out I had
2014: sick sinus syndrome, when I had an eight hour long operation (hybrid ablation) things went south and I had a
2015: pacemaker implant, when this did not work out the way it was supposed to I got on meds that gave me
2016: tinnitus and hyperacusis, that caused me to go into
2016: major depression, I'm on meds to calm T, H and depression down that now giving me
2016: burning feet.

Oh and I forgot - last week I've found out that my mitral valve is leaking and I probably have cardio myopathy.

I guess the combination of having T. and H. and being extremely tired is very hard for you cannot just go and find distraction.

 

[Zora]

@hartje5

oh wow, that must be really tough, I am very sorry
. I feel for you too. How old are you if I may ask? Not that age would justify having these problems...I am just intrested...
I am only 20 years old

My sleep-need got better though...I sleep 10 hours every night, sometimes 9...so thats not too bad compared to 12-13

atm my feet are my biggest concern because I took a job offer in a warehouse. So I will have to stand 8 hours everyday...

I wish you all the best hartje and I hope that your health issues will get better!

 

[hartje5]

Thanks Zora.

I'm 47 and have a family with three teenage children to fight for so I have to go on. Might it not be better for you to look for an job working in an office? I'm sorry you have to go through this at such an early age.

Hope you'll find out what is going on with you're feet. Be strong

Hartje5

 

[Zora]

Thanks @hartje5
Yeah I am going to another angiologist today...
Office job yes but its hard to find with no prior experience. The warehouse job is only 3 months long so..

Oh okay, wow. Do you have a partner that can help you?
I wish you very much strength...

Yeah going through this bullshit at 20 sucks. But I have hope that my feet are going to be okay again one day if I can find the cause of the pain...Tinnitus sucks even more because I know that I will always have it which is really hard to accept

 

[hoper]

i have
chronic tinnitus
chronic hip pain
chronic heavy allergies