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allaloneJade

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It seems as if so many conditions are so closely related it is hard to determine which one or combinations one may have.

Several years ago I went to my doctor and I told him I was tired all the time, he gave me some stimulants and told me it would restart my system and that I needed to change professions. I left feeling defeated. Over the years I have always mentioned being constantly tired when I go to the doctors and it seems to be brushed to the side.

A year ago we made a decision for me to take some time off and hope that with a month or two of rest that I would feel refreshed and get back on track.... Like I said that was a year ago, and I am still at home, not working and seem to deteriorate by the day in my opinion even though I push to keep myself as active as my body and mind will allow.

I have two affirmative diagnosis that I am being treated for, the first is PTSD, the secondary is ADD. I go to weekly therapy sessions and have finally after many tries, found a combination of medications that work for me without making me feel worse and without making me so null and void that I detach from reality. So I am good on that spectrum. BUT... there are these things that have been happening to me, they have been going on a long time, but I tried to be a trooper and hide it from my family because I did not want my husband or sons to worry about me, they are all entering important phases in their lives and they need my support, not them lending me support.

All that being said, last year I went to stop up into a truck and I fell, I to this day believe I blacked out. I hit the ground and when I came to my senses my back felt contracted in the lower regions. I went to my doctor and he did some xrays and tells me I need an MRI as he sees I have DDD in the C-Spine but sees nothing in the lumbar according to the xray. Because of the changes last year with insurance plans I struggled for months to get he approval for the MRI. That test was completed 3 months ago and the doctor told me there was nothing really wrong with my spine. My husband asked him to send me to a neurologist and he really did not want to do so, instead he sent a referral for a pain management clinic. The clinic never called me, so several phone calls later I had a referral for a neurologist and the wait began.

I went into the appointment knowing very well what the MRI showed, or rather the lack of it really showing anything at all, but I knew I had pain, and a lot of other symptoms that I will list further down in this message. So in my mind I am thinking that this person will actually listen to me and understand the pain is real and there is something going on with this body of mine. The appointment was a total bust! The female doctor I seen started by telling me the MRI did not find anything and she wanted to know just why I was there, I explained that I do understand that MRI shows nothing, but something is going on and it is real and I need help finding some answers. This is when things went out of control, the hospital system is on a linked computer system so they pull up your file on the computer and everything about you with that hospital system is there. She sees that I have PTSD and starts in on me about it, I explained that I have no obligation to disclose to her the nature of my PTSD, that was between me and those that treat me for PTSD, I was here to see her for the physical things going on with me. I went into a fight and flight mode and was escorted to the desk to pay for the visit and I left with no answers. I made my way to my car and I bawled like a baby. I had driven a hour one way to this appointment in hopes that someone would actually hear me and help me discover the answers I need as to why I am deteriorating.

At the start of the next week I was in my weekly therapy session and I explained the story in complete detail to my therapist. She asked me to sign some papers and she would work as a liaison. I also went home and filed a complaint about the doctor I had seen on the hospitals website. A couple of days later I get a letter from the neuro office that I was being sent for an EMG with nerve conduction.

When I went to the appointment for the EMG and nerve conduction the tech explained that the areas the orders were for were for my hands and arms. The results were I have carpal tunnel in my right hand and the doctor who reviewed the results in office said I have something going on in my C-Spine, but he does not have a DX order to test that area. Then they see the referring doctor who sent me there, and this is where things took another turn. Apparent a couple of days prior to my appointment for the test, the doctor who wanted to make my appointment all about my PTSD was let go from the practice. So what is happening now is the practice is waiting on an opening so I can see one of the other neuro's.

The next day I woke up deathly ill with a fever and my right lung weezing and feeling like it was full of fluid. I went to a nurse practitioner who is close to my house who gave me some antibiotic shots, and some scripts. Two days after the EMG testing, on a Saturday mind you my phone rings and it is a number I do not know, I answer and it is the Pain Management Clinic wanting to know if I still wanted to take the referral and come and see them. I took the referral, I figure what the heck, maybe I can get some answers there even though I am not a fan of what those places do.

So the problem with my chest infection continued to worsen even with the shots and the oral meds, I had given it a week and I felt worse so I returned to the nurse practitioner. She said something just is not right, she had done a regular panel on my blood the week before for the standard stuff, it all was ok other than my BP was high that day. So she ordered a CBC and a chest Xray. That was Friday and I should have results sometime the first of the week. In the meantime I am in limbo with that.

So as for the symptoms that I have going on with me, here is my list....

...almost constant headache, not much relief from that.
... bubbles that are just water filled appear behind my ears and on my fingers. It is not puss it just seems to be water.
... I have never had acne in my life, not even at puberty, but I have been getting pimples, the nasty kind filled with white puss or whatever it is, on my face.
... I am always tired, no matter how much rest I get or do not get.
... I have pain that moves from place to place. It is sometimes in the joints and sometimes in the muscles.
... Constant muscle spams. They move all over my body from place to place, and while not painful, they are quite annoying.
... I have chest pains, I have had my heart looked at even though pain is on wrong side, I had a EEG and a stress test, it showed nothing. But the pain is there and is on my right side to middle chest.
... My eyes jump and my vision pixilates, that's the best way I can explain that. It takes a while for things to come back into focus.
... My arms feel like they weigh a ton. I cannot use them but for a minute and have to rest them and then return to whatever I was doing.
... My stomach hurts often. It is not the kind of pain you get when you need to void, it is hard to explain.
... I have heartburn almost constantly. It rarely seems to end.
... Some days I cannot go outside, the sunlight makes me feel like needles are stabbing my eyes.
... I have lost most of the hair on the front of my head going 2-3 inches back towards the crown.
... My veins have become smaller and very hard to draw blood from or start a line in.
... Heat just kills me. Everyone tells me I keep the house too cold and they have to wear hoodies in the summer and cover up with a throw, but I will be in shorts and a T and still feel hot.
... I have cold sweats. Just out of nowhere I will start sweating and become drenched, I end up taking 3-4 showers a day to wash the sweat off.
... My hands are changing, I have not white in the nail beds, only light pink and the skin above the nails is smooth and red.
... I often get cold sores on my mouth, something that used to only happen to me when I had a high fever or a cold, maybe 1-2 times a year, this now happens almost monthly.
... Sleep pattern.. I can not establish one, I have tried to no avail. I often tend to feel better and more active in the late night hours, and often go to bed about the time the sun rises.
... Up until the past 2 years I had only 2 or 3 UTI's, I now have them every couple of months despite drinking 8-12 bottles of water a day as well as drinking juice, I also have a healthy diet by the way making sure I get plenty of greens and other fruits and vegetables I need, I do not eat meat often, maybe once a week and usually only certified organic angus beef grown locally.
... I have started noticing bruises on my body with no recollection of what could have caused them.

SO.... if you have made it this far in this post congrats! Sorry I wrote a book, but I am so discouraged and I need to get it of my chest. I am scared, I mean who wouldn't be with all these things going on?

Because of my PTSD my therapist encouraged me to apply for social security disability being I am not able to work. I really struggled with that, it took me 3 months to get up the courage to start the claim. Starting the claim meant that I was accepting defeat, but with all these things going on I just am not able to work. I feel like scum for even applying. I have worked all my adult life and paid my taxes, so I know I have paid into the system, but it still hurts my ego.

I Am hoping for answers soon as to what is going on inside this body of mine. I have the mind stuff under control, and now the body is crazy, and doctors see you have PTSD think your crazy.. its a never ending circle.
 
I felt your frustration as i read, so sorry you are feeling so ill. A lot of us with chronic illnesses..go through many of these stresses...it almost does not all sound like just one thing.

Most of us have been to drs... Who had no clue what is wrong, i have been to drs that outright lied to me about test results...i had a back specialist order mri and show me all the things right with my back, year later took the mri to a pain clinic , he showed me everything wrong with the mri.

Its bewildering, my doc says you should check in more..i ask if there s anything new i should be trying...no...so why do i need to check in ?


Sure hope they can get you some answers and some help soon..in the meantime talk to us about it.
 
Hi... and welcome to the forum! If you stick around here and give/get support from others with fibro, you won't be "allaloneJade" any longer. There is *so* much support here!

I'm so sorry to hear that you're going through all of these issues. And you're right... some of the symptoms absolutely *do* mimic other things and it's often difficult to determine which one is going on.

Uh... gotta admit that doctor thing you mentioned with "here, take stimulants and change your job" had me gritting my teeth. Bad excuse for a medical professional! :cry:

I certainly understand your fear. I hope you'll be able to find someone who will be able to get to the bottom of this very soon! Wouldn't hurt to print out that list of symptoms you just told us to take with you to a doctor's appointment.

Some of things you listed sound as if it could be spine related... a spine out of alignment, etc. That would include the arm pains, and the chest pain, and the headaches, etc. Hair loss, and a few others things you listed are things I've heard can come with menopause. (Of course I have no idea of your age... :) just throwing out the first things that came to mind.)
 
I felt your frustration as i read, so sorry you are feeling so ill. A lot of us with chronic illnesses..go through many of these stresses...it almost does not all sound like just one thing.

Most of us have been to drs... Who had no clue what is wrong, i have been to drs that outright lied to me about test results...i had a back specialist order mri and show me all the things right with my back, year later took the mri to a pain clinic , he showed me everything wrong with the mri.

Its bewildering, my doc says you should check in more..i ask if there s anything new i should be trying...no...so why do i need to check in ?


Sure hope they can get you some answers and some help soon..in the meantime talk to us about it.

I agree with you in thinking there may be more than one illness or condition that is tearing away at my body.

I feel sorry for you that a doctor lied to you, that's asinine! I happen to be blessed with not one but two medical imaging specialist in my family so forwarding them the files of a MRI is easy and they can give me their opinion on what they see.

I laughed out loud when you said the doc wanted you to check in more, there is a local doctor here that has people on the comeback WEEKLY! I have asked these people just what they do in there every week, some say things like checking blood sugar or blood pressure. REALLY? I would be destitute from all the co-pays and deductible, oh wait, I already am and I do not go once a week LOL. But really, you know if you were to go in more often the clinic would just be making more off of you and you would probably still be looked at in the same light.

I too am hoping for answers soon, I should be hearing back from the chest xray and CBC tomorrow or the next day. I am sure the xray is ready, but the office will wait to call me until they have both results so they do not have to call me more than once.

Hi... and welcome to the forum! If you stick around here and give/get support from others with fibro, you won't be "allaloneJade" any longer. There is *so* much support here!

I'm so sorry to hear that you're going through all of these issues. And you're right... some of the symptoms absolutely *do* mimic other things and it's often difficult to determine which one is going on.

Uh... gotta admit that doctor thing you mentioned with "here, take stimulants and change your job" had me gritting my teeth. Bad excuse for a medical professional! :cry:

I certainly understand your fear. I hope you'll be able to find someone who will be able to get to the bottom of this very soon! Wouldn't hurt to print out that list of symptoms you just told us to take with you to a doctor's appointment.

Some of things you listed sound as if it could be spine related... a spine out of alignment, etc. That would include the arm pains, and the chest pain, and the headaches, etc. Hair loss, and a few others things you listed are things I've heard can come with menopause. (Of course I have no idea of your age... :) just throwing out the first things that came to mind.)

Thank you I do plan to stick around when I am able. You know how it is, some days I cannot even make it to the computer. I have a ipad and a Bluetooth keyboard, but I do not like the way they work, I am old school!

I think that doctor was old and tired, a few years after he told me that and gave me those stimulants which I believe were ADHD meds (one weeks worth) he came down with cancer and is no longer with us. He was an older fella, and pretty old school himself. The lady that was working with him in his last few years as a NP is still there and is now under the direction of his son and she really spends time with her patients and seems to really care. So I think she will help me get some answers. She seems very willing to listen to me and will order tests if I want them ran. I tested her out on that a couple of weeks back with asking her to run a panel on blood and check my urine, which she did with not even asking why so I have faith in her.

I totally agree there is something going on with my spine. While I was laid up this week with the crud I did a lot of researching and it seems that the doctor who did my nerve conduction and EMG is on to something, now to just get the order for him to test that area. I know it is not bone, it had to be nerve related. My xrays and MRI both look good as far as the bones go. I also have seen the chiro a few times and he tells me I am very much inline, so its going to be a nerve in the spine or on the spine I would bet. Theres nothing else it could be unless its just fantom pain.

Today I had to stop in at a dinner my husbands extended family were having, he had to work so I had to represent. Anyway, a ton of his extended family is in the medical field and they seem to think along the lines that I may have 2-3 things going on with me, but are majorly concerned over the drenching cold sweats, these are not night sweats, I used to have those after I had a hysterectomy years ago. But as far as the pain I have they have told me to ask to be checked for MS, Lupus, Fibro, and CFS. I did not tell them I had already started reading about those things, so them mentioning the same things I was reading about made me feel I was looking in the correct directions.

I get so frustrated, I can not even garden anymore, all the flowers and veggies I did set out this year have not been tended to and will not get tended to, those will just be money wasted. So for the first time in my life I will have to 100% rely on the farmers market for my produce for the summer, so the trick to that is getting up early enough on Saturday mornings to get there and get what I need for the week. I suppose even though I cannot grow my own I am still contributing by purchasing from local growers.

I live alone for the exception of two days a week, my husband is an over the road truck driver, and the kids are all gone their ways in other states and countries, so its just me and my crazy parrot here. I have no one locally to help me as all my family are in other states, and my husbands immediate family is all elderly, so I am left to try and get myself from point A to point B and my biggest fears are having to go in the hospital for anything as all my friends have careers and families and could not drive me, and then there is the thing if I have to stay overnight who would care for my crazy bird? He hates everyone and that includes even me on some days.

This being sick all the time is not what I imagined my empty nest years being like. I had so many plans that are now on hold until further notice. The bright side to all this is that there is no one to disturb me when I need my rest, which is often.
 
That is quite a story! I am so sorry all of this is happening to you. I hope that you get proper treatment and feel better. There are so many helpful tips on this forum for natural remedies too. It is so frustrating to be in pain all the time. :(
 
G-d, I feel so sorry you are going thru this and I do feel your frustration! Nothing infuriates me more than stupid doctors trying to blame everything on your mental state. Yeah, when my PCOS started acting up again they said it was all in my head, my hair was falling out and it was caused by stress, right! It's scary to think we have to depend on some really stupid and close minded people... to take care of our well being!

BTW... I also suffer from headaches and I must say it's one of the worst pains someone could ever deal with on a daily basis, I'd rather the pain be in my leg... but not the head or the neck!

I truly hope you find some answers soon, hang in there and good luck!
 
Is comforting to know I am not alone. Thank you for the warm welcome and sharing with me.

My story continues to be one crazy event after another. I apparently slept for 20 hours and when I woke up I was drenched in cold sweat and had breathing problems. Being I woke up after clinic hours I was forced to seek help in a ER. I checked in and it was a hour and a half later before the triage nurse seen me. Another two hours later I was taken for a chest X-ray. Then nothing.... I ended up being there for 7 hours, at that point I was told it would be another 5-6 hours before I could be seen because they had no beds. I left there (this was last night) and returned home, had some tea and what meds I had and went to sleep.

I called to see about my first chest X-ray and CBC results today and they did not have them, nor did they return my call before the end of the business day. So here I am, suffering another evening in hopes the morning will bring answers.

This evening I compiled my story, including last nights events and sent it out to the attorney general for my state, my state rep, my congressman and the governors office. I do not know that it will do any good, or that anyone will read it period, but it feel like I need someone official to see what is going on and perhaps advocate or look in on this situation, to to just for me, but for the many others this is happening to. A friend of mine runs a support group for mental health advocacy so I called her up and she explained to my that in my state there are many who are having the same issues as I am having. There apparently is a problem within our state. I got the name of a couple of activist groups who advocate for people with disabilities and people with mental illness and I plan to contact them too.

Its so frustrating when you know your hurting, you know something is wrong in your body but no one listens to you, and its not just about mental health, its doctors listening in general to any person who is suffering with an illness of any kind.

And the story continues....

I hope everyone's day was better than my own.
 
I have Fibromyalgia, Degenerative Disc Disease, Cervicogenic headaches, Neuropaltry in feet and legs, Irritable Bowel Syndrome and a few others. And I will be 28 next month. Just too young for all this. It took so long to get diagnosed and several physician changes, especially after one diagnosed me with something and didn't want to see me as a patient anymore, tried everything to get me to think I made it up, even wanting me to get mental help! It is so hard to deal every day with constant pain, and to have people not understand and just think it's all in your head, makes it even harder. Especially when it's family attacking you left and right.
 
Treeca86, so sorry you have to live with all of those diagnosis, you are so young! Yes it is hard when they think you are just making it up, I have a friend that battled with that for a very long time before she found a doctor who would listen to her and now she is getting her health back on track thank goodness because I really hated seeing her suffer so much.

I went to the clinic and asked for my results of my tests. They say all my CBC numbers are normal, so I am trying to decide what the next step will be. I am going to talk to some family members this weekend, they are all medical staff and have been trying to help guide me and help me understand things concerning the terminology and all that medical stuff, and see what the think should be done next. Last night was a restless night for me, I woke up 18 times and then ended up sleeping most of the day away because I was worn out from waking up so much. Then tonight I am tired and I am hurting. I hope I can at least get a couple of hours of sleep in before morning I have a full Friday on the agenda.

So, let me ask you ladies (I am assuming were all ladies, if not then men I apologize ahead of time) some questions.

I have muscle tone, but my muscles are tired so doing things like using my straight iron really do a number on me. I tend to wash my hair about twice a week and do my best to straighten it and hope it stays looking ok for a couple of days. How do you ladies deal with your hair? Do you do like I do and only fix it a couple of times a week? I know I could never do it daily.

With cooking, do you tend to do a lot of one pot meals? With me it varies by the season. For instance right now a lot of gardens are producing, I normally have a huge one, but I cannot do the work anymore but friends and the farmers market are keeping me in stock with fresh fruits and veggies. But this time of year I tend to eat mostly veggies. I have been doing the fridge pickles, tomato sandwiches, kabobs with the veggies and marinated in something. This past winter we lived on roasts and stews. I just find those kinds of things easier to make. And for the really bad days I always have something in the freezer like a pizza or a lasagna or something I can just pop in the oven.

How do you tend to the house? This is a big tricky one for me. I used to have a cleaning service back when I worked, but when I had to stop working we had to cut luxuries and that was one of the ones we decided to cut. I am an empty nester and my husband is only home two days a week so it is just me and the bird but I still find it rather difficult to keep things up. I use a steam mop so I do not have to put a lot of energy and effort into mopping. One task I find I fall behind on is dusting, the days that I do dust it takes me nearly the entire day because all that using my arms wears me out. And as you can imagine, I do have to spot sweep constantly with a bird, he likes to throw whatever he has and spit things out. Its not really nasty, just a chore to keep up with but I wouldn't trade him for the world, he is amazing.

I struggle with the laundry too! I would be embarrassed to tell you how many times I have to restart the dryer some days so my clothes and linens are not wrinkled to oblivion. Luckily being it is mostly just myself here and the husband comes in for a couple of days then gone for five, that gives me five days to get all the laundry done up.

I hope everyone is having a better night than I am. It is after midnight here and I want to sleep so bad but the pain will not allow me to.
 
I got the name of a couple of activist groups who advocate for people with disabilities and people with mental illness and I plan to contact them too.

I think you may be onto something here. I have a few friends who are medical professionals, so I hear all the stories. Recently a patient was refused a particular cancer treatment payment from the insurance company (the insurance company WAS paying it before obamacare) :-( and people are dying because of it.

Anyhow, to make the story short, the patient was rather young and had some people on her side who simply refused to give up fighting for her. They finally got the decision reversed and she recently finished the treatment cycle.

I have been seeing one horror story after another since this insurance nightmare started in the U.S. To let insurance companies decide who gets treatment when it's needed instead of the doctors in some cases.... *ludicrous!* :cry:
 
Well it looks like one of my letters was read! Saturday morning I received a letter in the mail from my congressman with a form to sign so they were allowed to contact social security on my behalf, also included were questions they needed further information on concerning the problems with the healthcare or lack of healthcare I was receiving. I immediately filled everything out and put it right back into the mail at the post office.

I used a lot of energy this Saturday at a family event so I have been in bed for the past two days trying to recover from that. I hate that I have to be so careful with my energy. Its like I am only allowed so much energy for a certain period of time and if I use it all up I just have to do without until I get the recharge back.

I felt so bad yesterday and I was supposed to take my husband to work because I put his car in the shop for some repairs and I just could not get myself up and around to do it and told him to just go on to work with my car and I would just sit at home all week. I hate when I do that (Its happened before) because just when I think I have everything I need I end up needing something later in the week from the store, this time it is milk... Oh well I will just make do and find things to fix that do not require milk or that I can substitute with plain yogurt. On a good note, we were given some garden veggies that a friend had way more than they needed, so I get to enjoy those this week! I have some plants in the ground but I have not been able to tend to them and they are not producing much of anything so I was super excited when someone had extra and thought of us.
 
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