feeling frustrated

[shaybot]

Im don't really know if Im looking for advice or just a shoulder to cry on at this point. but here I go

I have been having health problems for a more than a year now, and no doctor can diagnose what is going on. I have been to a cardiologist, two neurologists, an ear nose and throat doctor, a rheumatologist, and 4 visits to the ER.
I have really bad lightheadedness and dizziness. I basically live everyday in pain. I get shooting and stabbing and cramping pains in my limbs, I also have as many as 10 headaches in a day everyday. My arms and legs get tingling and numb very frequently.

It's not always about the pain, its more about just being uncomfortable and unhappy all the time. Its also the not knowing what is wrong with me that is so frustrating.

Additionaly, I am showing no visible symptoms so its hard for people to accept that I am sick. My sister thinks I am doing this as an act for attention.
Luckily the rest of my family realizes that I'm not that good an actress.

Its hard, because I cant do anything, I just want to go out and live my life , but im so drained, and so dizzy that its difficult to be active.

Im sorry if this is too long and if no one wants to read this, but I just wanted to get this off my chest.

 

[grainsmommy]

*hugs* I'm sorry you are struggling so much and it's even harder when loved ones dismiss you. Have you ever read the spoon theory of invisible disabilities? It helped me relate so much and be able to explain in a simple way to people I love what is going on. Just google that and you will find it. It's about lupus, but highly relatable for all "invisible disabilities."

I suspect your family is sad you feel bad and wishes you didn't. I am hoping they don't intend to hurt you with their own wrestlings. Wishing you all the very best!

 

[mommasita]

Im don't really know if Im looking for advice or just a shoulder to cry on at this point. but here I go

I have been having health problems for a more than a year now, and no doctor can diagnose what is going on. I have been to a cardiologist, two neurologists, an ear nose and throat doctor, a rheumatologist, and 4 visits to the ER.
I have really bad lightheadedness and dizziness. I basically live everyday in pain. I get shooting and stabbing and cramping pains in my limbs, I also have as many as 10 headaches in a day everyday. My arms and legs get tingling and numb very frequently.

It's not always about the pain, its more about just being uncomfortable and unhappy all the time. Its also the not knowing what is wrong with me that is so frustrating.

Additionaly, I am showing no visible symptoms so its hard for people to accept that I am sick. My sister thinks I am doing this as an act for attention.
Luckily the rest of my family realizes that I'm not that good an actress.

Its hard, because I cant do anything, I just want to go out and live my life , but im so drained, and so dizzy that its difficult to be active.

Im sorry if this is too long and if no one wants to read this, but I just wanted to get this off my chest.

It isn't too long, and most certainly you will find shoulders and friendship, advice, and more here.. I read every word, more than once

I am sorry for everything you are experiencing.. I most certainly can relate.> The PP's suggestion of the spoon theory is a great one indeed.. I am NOT a Dr, but have you had your B12 checked? this is often not tested in your general bloodwork.. I can tell you I have been through hell and back with other things, but I have pernicious anemia, and a lot of what you are describing can be many things, but it "could" be low b12, which is a lot more common than we think.. My Dr told me it is rarely tested.. Google the symptoms and see..

My body rejects (many do) the vitamins, and my levels were DANGEROUSlY low.. I self inject now bi-weekly, but for a year was doing it 2x a week to get them up there...

I know we always worry what our family and those closest to us think, but you have to put that out of your mind, you and you only know your body and how it is feeling.. Giant hugs. Please let us know how you are

 

[Christine]

I agree with mommasita. Have you had various lab work to check for deficiencies.

I had some similar issues as you did and I finally had to personally request a B12 test. Now, mine was not a B12 issue. I did find out that my Vitamin D was very low and I am on supplementation now. I have to say, it has made quite a difference in my dizzy spells. I've also forced myself to sit outside in the direct sunlight for 15 minutes per day without sunscreen as well as make myself do some exercise even though I feel so off balance I could fall off my treadmill. I am MUCH improved.

 

[John VN]

Another agreement that a complete and thorough blood work-up is the place to start.

Imbalances can wreak havoc that can not be found by exams.

 

[shaybot]

Thanks for all the hugs everybody . You have no idea how much it really helps. I actually have had blood work done like 3 or 4 times. THey usually test the basics, but they expanded it a bit and still found nothing. They even looked for hughes syndrome, and Im pretty sure they tested for b12 deficiency.
I actually have hypothyroidism so my blood is tested pretty regularly and so far nothing has been off.
Im not 100 percent sure if we did b12 though so ill definitely mention it to my doctor.

On the family front: Its just hard because I cant drive so she has to take me to my appointments, and its just difficult when I know she believes nothing is wrong. Anyway, I do think shes starting to realize that this is really happening to me.

On a side note I was given a pain medication which is actually starting to help, so thatll keep me until we can figure out whats going on. I have an appointment for a headache research facility in November, so I just have to be patient

Thanks for the good wishes!

 

[shaybot]

So I went to a neurologist about two days ago. He sent out for some blood work (including west nile and lyme disease, and some of the ones you all mentioned) In the meantime however he diagnosed me with several migraine conditions. But the diagnosis is more of a description of the symptom, and does not actually give us the cause. He put me on a Paleo diet because many people with migraines (no matter the cause) have had improved conditions without meds. (according to him) I am optimistic, but the pain is getting worse as my body gets adjusted to a new way of eating. He also considered ehlers danlos but wants to wait to see the results come back. I have also been tentatively been diagnosed with fibromyalgia, but in my case he believes it is either a symptom of the real problem, or just a piece of the puzzle.

Thank you guys so much for your support! it really means a lot

 

[mommasita]

So I went to a neurologist about two days ago. He sent out for some blood work (including west nile and lyme disease, and some of the ones you all mentioned) In the meantime however he diagnosed me with several migraine conditions. But the diagnosis is more of a description of the symptom, and does not actually give us the cause. He put me on a Paleo diet because many people with migraines (no matter the cause) have had improved conditions without meds. (according to him) I am optimistic, but the pain is getting worse as my body gets adjusted to a new way of eating. He also considered ehlers danlos but wants to wait to see the results come back. I have also been tentatively been diagnosed with fibromyalgia, but in my case he believes it is either a symptom of the real problem, or just a piece of the puzzle.

Thank you guys so much for your support! it really means a lot

It can be such a long process. I do know this.. I went through it, and found out I had Chiari Malformation, had to have surgeries for it, and that was the MAIN cause of my Migraines.. I am no Dr, and am NOT by any means trying to say this is the cause, you just sound so much like I did.. I was just discounted for so long, even my CT scan was clear, and then my MRI, and then boom, I well ,I nearly died. My brainstem was into my spine, maybe you can look this up.

Here I sit 4 years later, and a few more surgeries waiting on an EDS definitive diagnosis. THat is a geneticist's call.. LONG wait here. I do have fibro, and it is a battle, this time of year, and the changing of the seasons tend to do make things so much worse.. There is a great thread on the disabilities forum going on with a great bunch of gals.. Not that you can't post here as well .. I must apologize, I haven't been active there, too much going on, but SO many great people..

Regarding EDS.. Ugh Ugh and more UGh.. This past two years I have torn everything in my body from my achilles to my hip to my rotator cuffs, and sublax now and dislocate by stretching, so it is just a signature I need, as my Dr is 99.95 sure..

Please feel free to PM if you like, and DON"T Give up..

 

[shaybot]

I just had 3 MRIs (head neck and arm) , an eeg, eng (I think that's what its called, and an EMG, done this week, so hopefully we will be on our way. On the EDS front the doctor said it was definitely a consideration, I don't think Ive ever had a full dislocation (im sure I would know), but based on research and thinking back, I may have had some partial ones that I just never got treated, I thought it was normal to have pain like that, but am now realizing that it might not have been. Either way, im feeling more hopeful that we are on our way to at least some diagnosis(es) and really appreciate your advice mommasita.

 

[Shelly F - Ohio]

One thing that helps with my occasional leg cramps and nagging headache is banana's. These symptoms are a sign of lack of potassium.. Doesn't hurt to try eating a banana or two a day plus increasing your water intake.

Stay away from alcohol it will deplete potassium too and cause ringing in the ears.

 

[John VN]

Wishing you more positive progress.

One thing that helps with my occasional leg cramps and nagging headache is banana's. These symptoms are a sign of lack of potassium.. Doesn't hurt to try eating a banana or two a day plus increasing your water intake.

Stay away from alcohol it will deplete potassium too and cause ringing in the ears.

Providing there is not a need to dramatically watch sugar intake, GI, apricots provide more potassium than bananas and low magnesium can cause cramps also.

http://www.healthaliciousness.com/articles/food-sources-of-potassium.php

 

[shaybot]

I had my blood drawn on my birthday as well as all of the tests Ive mentioned before. We got most of the results from one of the doctors today.

Basically my neck is a mess, It has no curve and is completely straight which is unusual. I also have two herniated disks and one bulging disk that might be herniated. With the blood test we discovered incredibly low vitamin D and slightly low iron. I also tested positive for lyme disease but not conclusively so, so we have to get an appointment with another doctor for further investigation. It was clear from my antibody levels that my body has been fighting something, were just not 100% sure that its lyme disease.

The parts that are getting me down are that, there is still so much unknown, and the doctor feels like there is more to it. Additionaly if medications and physical therapy don't help my neck ,surgery is in the realm of possibility which terrifies me.

Sorry for unloading on everyone, but I really appreciate everyones advice, and I did mention some of it to my doctor. thank you guys

 

[pfishgirl]

After a week in the Hospital and a zillion tests and like 20 vials of blood for every disease in the Universe my Fiance was just also diagnosed with Lyme Disease.. He tests positive for 7 out of 9 on one test and 1 out of 3 on the second one.. So basically he is positive and negative for Lyme

 

[mommasita]

I had my blood drawn on my birthday as well as all of the tests Ive mentioned before. We got most of the results from one of the doctors today.

Basically my neck is a mess, It has no curve and is completely straight which is unusual. I also have two herniated disks and one bulging disk that might be herniated. With the blood test we discovered incredibly low vitamin D and slightly low iron. I also tested positive for lyme disease but not conclusively so, so we have to get an appointment with another doctor for further investigation. It was clear from my antibody levels that my body has been fighting something, were just not 100% sure that its lyme disease.

The parts that are getting me down are that, there is still so much unknown, and the doctor feels like there is more to it. Additionaly if medications and physical therapy don't help my neck ,surgery is in the realm of possibility which terrifies me.

Sorry for unloading on everyone, but I really appreciate everyones advice, and I did mention some of it to my doctor. thank you guys

My goodness I am sorry I missed this..

Try and go one step at a time, if not it is way too much to process, and quite possibly drive yourself worse for nothing.. I know it is easier said than done, but please try

How have things gone so far?

 

[mommasita]

After a week in the Hospital and a zillion tests and like 20 vials of blood for every disease in the Universe my Fiance was just also diagnosed with Lyme Disease.. He tests positive for 7 out of 9 on one test and 1 out of 3 on the second one.. So basically he is positive and negative for Lyme

I have heard it is a tricky one.. How is he doing?

 

[pfishgirl]

I have heard it is a tricky one.. How is he doing?

I've heard it's a nasty one too
He will be on Antibiotics for a Month!! and then has to see a Lyme specialist

 

[scarlet_ibis]

Do you know whether you have hypothyroidism or Hashimoto's? The latter is an autoimmune disease, so merely treating the thyroid doesn't address the autoimmune issues that continue to wreak havoc on your system.