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I just want to cry

post #1 of 24
Thread Starter 
Some days, I just literally want to die. The exhaustion I feel, the pain I'm constantly living in just becomes too much. I've been to doctors. Lots of them. They all tell me my symptoms are all unrelated. I was diagnosed with fibro when I was about 17 or 18. Then I was later undiagnosed because it didn't exist. But they still couldn't tell me what's wrong. Apparently the way I feel all day every day is normal. Everyone is tired and has aches is what I get told. Then I was diagnosed with lyme, and chronic lyme syndrome, only to be told THAT doesn't exist either. Exersize more, eat different foods, try this vitamin, it's all in your head because you are depressed. This is what I get. From family, friends and hcps. Today is just too much. Insomnia has been really bad lately, and yesterday I napped from 2-6pm and went to bed again around midnight until 8 am. it was an up and down fitful sleep, but it was ok. Better than usual. My dh bitched about gonig to be late and getting up early. He went to bed around 9:30 and was up around 7. How is that going to be late? He does so much, and I really shoudn't be upset, but I'm just tired of being labled as lazy or difficult or crazy instead of sick like I feel. What's worse is the only thing that helps make me normal so far that I've found are freaking narcotics. Not only do doctors LOVE to prescribe them, but I just LOVE taking them. It doesn't help that I have a history of alcoholism. I mean they help my pain, and I can be a little more productive that day, but I pay for it in nausea, itchiness, and more pain the next day. I have an appt on monday because this "relapse" or whatever anyone wants to call it has been really bad, and I'm hoping I'll get a referral to a neuro or something. The headaches have been getting worse, and my clumsiness as well. My word retrieval has been really bad... I call everything a chicken. which is kind of funny, but oh so frustrating. I've had 8 miscarriages, and the endo I saw told me it was NORMAL for women to miscarry. Yeah, I thought 1 maybe 2 was normal but 8?! I'm so fed up and today has just been really bad.
post #2 of 24
You need to contact this lady. www.heallyme.wordpress.com
With the help of her dr., she has been able to heal her lymes and coinfections naturally.
Paula
post #3 of 24
WOW... you poor Mama! I'm so sorry you are feeling so poorly - and for so long.

Have you ever had the 24 hour cortisol test for adrenal function?
What about thyroid labs?

http://www.drlam.com/articles/adrena...gue.asp?page=1

Frannie
post #4 of 24
Thread Starter 
i've been tested for thyroid and did a 24 hour urine cortisol that was "essentially normal." My thyroid labs are always wierd. My TSH is always normal, but my t4 is always very low. So they tell me since my tsh is normal that my thyroid is functioning normal. But a normal tsh only means that the pit is telling the thyroid to work, not that the thyroid is actually working, but when I tell them that they look it me like I have 6 heads.

Whenever tests come back normal or their treatment doesn't work I just get written off as making it up.

Thanks for commiserating and I will check out those links.
post #5 of 24
Thread Starter 
I did a symptom checker, and the list of conditions they spit back out at me was:

Peripheral neuropathy
Shingles
Fibromyalgia
MS
RA
RLS
CFS
Lupus
Lyme disease
B12 deficiency
post #6 of 24
I'm so sorry you're going through this.

I was chronic for a good portion of my life so I know exactly how hard it is on you. Some people are more sensitive to the environment to the point that everyone else thinks their crazy! My dad was like this and I am even more so. What bothers me won't even be a blip on most people's radar.

It took years and lots of $$ to wade through the issues and get on a decent track and even now I'm off as soon as I get the slightest bit near a bacteria or viral microorganism that won't even affect the next person. In essence, you're not alone!

If you can find a doctor (allopathic or natural) that will work with you, the following things are probably something you want to check out:

Metal poisoning (from mercury fillings from you or you parents)
Liver (insomnia)
Adrenal (better yet, your entire endocrine system)
Mold in the house
Living near electrical stress (towers, switch stations)
Living near very polluted water

keep us posted!
Kolleen
post #7 of 24
The fact that your t4 is low is proof that your thyroid levels are off.
I strongly encourage you to get the 24 hour SALIVA test b/c it is far more accurate and so many of the symptoms you describe sound like adrenal symptoms.
You are so not the first person to have clueless doctors - I know how challenging it can be to figure things out when you are struggling with health issues, brain fog etc. It can feel so daunting. I was in the same boat. I had to order my own cortisol test through the mail from canaryclub.org and I had to INSIST that my MD do ALL the thyroid labs.
There's a list here:
https://sites.google.com/site/natura...id/hypothyroid

If your thyroid levels are off - which it sounds like they are - then you can betyou are dealing with a whole host of hormonal imbalances that will need to be addressed before you can expect to feel better.

If I were you I would try to find a practitioner who has a clue about treating thyroid - perhaps a ND or osteopath? I found a wholistic MD in my area. I was uninsured and could only afford ONE visit so I called his office and explained my situation. I took in all my labs and mile long list of symptoms/history and left with adrenal and thyroid support that I needed to finally get my health back. If I had relied on my regular doctor's care I would be half dead by now! It's unfortunate that we have to do all this detective work and beg and plead for proper lab work, but we do sometimes.
You can post here to find a practitioner in your area:
http://forums.realthyroidhelp.com/in...bc82f74f4617bd

FP
post #8 of 24
Quote:
Originally Posted by kolleen9 View Post
I'm so sorry you're going through this.

I was chronic for a good portion of my life so I know exactly how hard it is on you. Some people are more sensitive to the environment to the point that everyone else thinks their crazy! My dad was like this and I am even more so. What bothers me won't even be a blip on most people's radar.

It took years and lots of $$ to wade through the issues and get on a decent track and even now I'm off as soon as I get the slightest bit near a bacteria or viral microorganism that won't even affect the next person. In essence, you're not alone!

If you can find a doctor (allopathic or natural) that will work with you, the following things are probably something you want to check out:

Metal poisoning (from mercury fillings from you or you parents)
Liver (insomnia)
Adrenal (better yet, your entire endocrine system)
Mold in the house
Living near electrical stress (towers, switch stations)
Living near very polluted water

keep us posted!
Kolleen
I am going to add celiac disease and gluten intolerance to Kolleen's list of things you should check out.
post #9 of 24
I second FrannieP's post. Get thee to a ND or osteopath. Most "conventional" doctors are absolutely clueless and useless with thyroid problems.
I can't believe the endo told you that. (I can but .. wtf?!) And it's unbelievable that all they've run is TSH and T4. Some doctors seriously make my head explode with their useless cluelessness.
post #10 of 24
I am going to put a whole different spin on things which obviously you are free to disregard, as it probably sounds way radical. But can you turn your thinking about your health issues 180º and see it as your body doing what it is programmed to do? Our bodies are constantly in a state of homeostasis and all those symptoms you are experiencing is the body healing. So, this is actually a positive thing. However, it seems like the process is being prevented from being completed, so I ask you to think back to when you first started experiencing these health issues at 17 or 18, and think about what was happening in your life. I may be off, but I would hazard a guess that something stressful occurred. Begin your journey to wellness by dealing with and healing these events, and you will find that space will open up in your life for other help to come to you. Even by writing this post and asking for help, you have energetically provided a way for those blocks to dissolve. One of the gentlest and easiest ways to start is by taking flower essences. Flower essences work on the emotional body and are very gentle, yet very powerful. Check out the Flower Essence thread here, it is long, but it will give you some idea of how to work with them, you don't need a practitioner to prescribe for you, you can do it yourself without any concern about getting it wrong.

I am not saying don't bother with the medical route if that is where you are drawn, but it is obvious that thus far it hasn't worked for you. Western medicine is pathological medicine, in that it is always looking for what is wrong, what I am suggesting you do is look for what is right, and what is right is just what your body is doing. With that mindset, you can decide which course of action you wish to pursue to assist your body in its healing; homeopathy, nutrition, structural, energetic etc. However, I think the key lies in your late teen years, heal whatever occurred then and I have a feeling that physical healing, utilizing whatever modality you choose will follow quickly. I would not however, recommend anymore pharmaceutical interventions, because the body is going to have to work really, really hard to clear them, and you are exchanging short term benefit for long-term difficulties. Also, I wouldn't focus too much on a diagnostic label, they are essentially meaningless, just names given to a group of symptoms, you are not your disease or condition, and by giving your symptoms a name, you are energetically identifying yourself with that disease, and that is not who you are.

You have taken your first steps to healing, I wish you well.
post #11 of 24
Thread Starter 
last post not helpful. I realize you were probably well intentioned, but I am dealing with a very serious chronic debilitating disease. This is not the first time I have posted about this. I have spent the last 10 years of my life seeking opinions, suggestions and treatments for my symptoms. I have had labs done locally and consulted with physicians from all over the US. As soon as I think I am onto something and see someone locally, the process of healing quickly ends. I have done energy work, homeopathics, herbal remedies, pharmeceuticals, therapy, PT, OT, massage, hypnosis, acupuncture acupressure and many more. When treatment doesn't work, I'm written off as making it up or noncompliant because I don't fit their profile. That's fine. I dont need to fit a profile. I need someone who is going to say "i beleive you, and I'm going try to find out what this is and how you can feel better." I'm not looking for a label. i'm looking to get well. I don't define myself by any one thing, and by finding out what I do have will help me work towards healing. If you don't know what's broken, you can't fix it. My symptoms are NOT what my body is supposed to be doing. The thought of that makes me want to go slit my wrists in the bathtub right now. There is no stone unturned and no "key" lying in my late teen years. Nothing happened then that would "cause" this now. I have always been this way even as a child. I can trace most of these feelings and symptoms back to early childhood. My mother sought care for me and was given no answer. I was makign it up (she knew I wasn't). I diagnostic label ISNT meaningless to me. It's very meaningful because it validates me and sets us upon a course of action that can lead to wellness. I need the pharmeceuticals that I take, and will continue to try any others that are suggested and seem reasonable. By telling me not to, you are essentially asking me to give up any kind of releif I get now. Would you tell a type one diabetic to avoid her insulin because it is a pharmeceutical and her body will have to work really really hard to clear it? No. I'm almost certain you wouldn't. We are certain of one thing. My disease is autoimmune in nature. My body is NOT doing what it is supposed to, and after reading your reply, I feel even more depressed, hopeless and unvalidated. Your post really just shows that you don't understand. Maybe you "healed" yourself from MS or Lupus or some other chronic and debiliateing disease. That was your experience, adn I'm glad healing whatevere trauma happened to you cured your body, but that is not my experience. I'm not trying to be combative. You cant teach someone anything if they already know everything and I can't possibly get well if I don't beleive I will get well. But that in and of itself is not
post #12 of 24
Thread Starter 
These are the symptoms I've written down for my doc tomorrow. I'm going to ask for a referral to a repro endo and a neuro.

Insomnia and Fatigue
Joint pain (wrists, hips, ankles, fingers)
Headaches are becoming more intense and more frequent
Word retrieval
Slurred speech
Hot Flashes;
Intolerance to heat;
bright red cheeks
Shaking insides/feeling air in my brain/blood rushing
Vertigo/Faintness/Syncope
Heavy Chest
Chronic yeast
Dry itchy skin
unable to lose weight
Legs give out spontaneously while walking
Tinnitus (also think hearing is decreasing)
Visual changes (spinning, wobbling, double, mostly things are fuzzy/out of focus)
Trouble concentrating or remembering what I was doing, where I was, names
Clumsy: drop things, walk into things, mis-step off curbs
Electricity zapping down arms and legs, hands and feet “fall asleep.”
SI joint, below glutes and lump on back of neck always painful/sore
Incontinence when sneezing or laughing; urgency
Hot body/cold hands and feet
Break bones easily
Constipation
Constant thirst and hunger, even when I’ve just eaten
Eating carbs will ease the brain fog and shakiness,
Episodes of very low blood sugar (less than 50) and Occasional high fasting blood sugar (120)
Muscle twitches that feel like reflex jerks mostly in lower back and legs

Pregnancy always halts symptoms. Lose weight when pregnant, start to regain around 6-8 months. Only have sexual drive when fertile/few days surrounding ovulation. 8 1st tri miscarriages.
post #13 of 24
I am sorry you are in such I dark place. As I said, I only wish you well. I can understand my words are not want you want to hear, but maybe one day you will find the wisdom in them. I am sure you will connect with someone who can help you, several people on this board have offered suggestions, follow them up, the universe is offering you help -- take it.

And you are so right, you can't get well if you don't believe you can. Well believe. All the symptoms you list above are healing symptoms, but they come from a myriad of different things. I am afraid, no doctor on the planet is going to come up with any one diagnosis for you. You have to do this yourself.

Namaste
post #14 of 24
Many of your symptoms do sound similar to mine, and I've been diagnosed with Fibromyalgia. I don't see how you can be "undiagnosed from FMS because it doesn't exist"- it just sounds like you need a doctor who'll beleive you! It was a rheumatologist who diagnosed me.

There are basically three approaches I'm using that are helping me to function. Number one is accepting my limitations. If I need to stop doing something halfway through, I stop. I don't let people guilt me into doing more than my body can handle. I ask for help when needed, and say "no" without guilt when necessary.

Number two is figuring out my triggers and avoiding them. Numerous chemicals can make me feel a whole lot worse- breathing in chlorine, synthetic fragrances, and assorted cleaning products set me off to various degrees. Foods affect me even more- I feel a whole lot healthier when I avoid gluten, legumes (except small amounts of fermented soy) and dairy products (except for butter.) I was doing well grain-free for a while, except for insomnia, so now I'm experimenting with adding in more carbs carefully, and I'm still trying to find my balance. Too many carbs make me sleepy, too few carbs interfere with sleep.

The third general approach is making sure I nourish my body with the things it needs. This involves taking specific supplements and including nutrient-dense foods. This is closely related to avoiding food triggers and sometimes I need to weigh the risk/benefits of a specific food: should I try cutting this out of my diet to see if it's a trigger, or should I include it for its nutritional content?

I'm also getting regular chiropractic adjustments (this helps tremendously both with pain and vertigo) and I've recently started on a VERY gentle exercise routine- about 2 minutes' worth of stretches in the morning and evening. It's helping with arm motility and lower back pain.
post #15 of 24
Have you been tested for diabetes?
post #16 of 24
Wait, do you believe that part of this or all of it is due to fibromyalgia? It sure sounds like it to me. Have you tried neurontin or Lyrica for the pain? What about tramadol?

-Laura
post #17 of 24
Thread Starter 
Quote:
Originally Posted by A&A View Post
Have you been tested for diabetes?
Yes. My insulin, HBA1C, and post meal levels are all great. Ocassionally I dip into low blood sugar, and a few times I have had higher than normal but not very high fasting glucose.

Quote:
Originally Posted by supakitty View Post
Wait, do you believe that part of this or all of it is due to fibromyalgia? It sure sounds like it to me. Have you tried neurontin or Lyrica for the pain? What about tramadol?

-Laura

I was on neurontin for pain, and am uncomfortable with lyrica from what I've read. I can't take the tramadol/toradol family. It gives me extremely low blood pressure. I went to a patient first for a broken arm. They gave me a shot of toradol before xrays and ended up having to transfer me to a hospital because i bottomed out with bps.
post #18 of 24
Just out of curiosity and not to be nosey: What makes you uncomfortable about Lyrica? What about Cymbalta? And what did the neurontin do? These medications can have hideous side effects. I take Lyrica and it took me awhile to get used to it.
post #19 of 24
Quote:
Originally Posted by mysticmomma View Post
I can't take the tramadol/toradol family. It gives me extremely low blood pressure.
FWIW, although they sound alike, they are in two entirely different drug classes. Both analgesics, but different mechanism of action.

I hope you find the answers you need to heal.
post #20 of 24
Quote:
Originally Posted by mysticmomma View Post
I was diagnosed with fibro when I was about 17 or 18. Then I was later undiagnosed because it didn't exist.
That's really tough. Some doctors have this attitude like "fibromyass" or something like that. It's terrible. It's so easy to judge others when you have no clue what it feels like to be them. I hope you find the answers that you're looking for. I can understand the deep frustration that you're feeling.

-Laura
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