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    Old 12-08-2012, 03:03 PM   #1
    Jmarie1980's Avatar
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    Question Does any of this sound familiar to anyone????

    I have been having problems for quite a few years now, I have been to quite a few doctors, including a Rheumatologist. I apologize for the length of this, but Im frustrated and I am curious as to if anyone else has had any of the following symptoms, and what is your dx? I was told I have arthritis (in my lower back) and fibromyalgia. But, I believe there is more to it then that, and I am tired of not knowing. I intend on seeing different doctors in the coming months once my insurance kicks in, but for now, Im researching my symptoms, looking for a possible answer.

    *Hip pain, leg pain, foot pain:
    the pain in my hips are so uncomfortable that I cannot lay in one spot for too long, the pain in my legs keeps me from walking at a decent speed and the foot pain feels like a burning/aching on the bottoms of my feet. (Im OKAY @ work as long as I keep moving, I do have little pain but its a lot worse once Im stationary. If I get up from a sitting position, I can barely walk, Im hunched over and I walk very slow.

    *Thinning hair: I once had thick hair, but over the years it has become quite thing and whispy, especially on top near my forehead.

    *Boils: Ive been getting boils for as long as I can remember. Very painful, very embarrassing.

    *Pilonidal cysts: Ive had atleast 4 that I can rememeber in the past 4 years.

    *Fatigue/No motivation: Im so tired, its so hard for me to crawl out of bed in the morning for work, Im exhausted at work, but push through the day, and I have no motivation to do housework, not because Im lazy, but Im just tired and would rather just lay there and rest.

    *Poor Concentration/Memory loss: My short term memory is horrible, and I have the worst trouble concentrating and even making decisions.

    *Body temp problems: Im either extremely cold or extremely hot. Im usually more hot than cold, but Im never just comfortable. I sweat so much at work, that my hair is soaked and sticks to my face. Yes, I have a very physical job, Im a CNA, but, nobody else sweats like that. I cant tolerate extreme temps, the cold makes me hurt and the heat makes me sick.

    *Numbness/Tingling in my fingers: I have numbness mostly in my left hand (fingers) and on my right hand I have 1 finger in particular that hurts at the tip, it has a slight bump on it as well. I had my fingers xrayed, but was told no sign of rheumatoid arthritis.

    *Miscarriages: Ive had 3 miscarriages. Ranging from 7 weeks to 12 weeks.

    **if youve read this far, I appreciate it!!! Im almost done!
    Now, the boils Ive had since I was maybe a teenager, Im 32 now.
    The pain, the muscle aches, and all of the other symptoms I didnt notice until after I moved away from the Southern Half of the U.S. (NC).
    Someone said possible lyme disease, but I dont ever remember being bitten by a tick, or even having the bullseye rash.
    ALSO, I had a fall back in 2007, I slipped on some ice, broke my leg, ankle, and tore some ligaments, had surgery.
    I moved back to the Northern Half of the US around the same time I fell.

    Any thoughts????? Id love to go to the doctor and run a few things by him/her, but Im lost and dont know what it could be. Ive had tons of bloodwork, there was some inflammation, but they didnt know what was causing it. Other than that, they really didnt find anything, I dont even remember what all they tested for besides lupus.


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    Old 12-09-2012, 08:54 PM   #2
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    Re: Does any of this sound familiar to anyone????

    Hey, I am sorry you are going through all of this and it can be very frustrating when doctors don't know whats going on because a lot of times they don't.

    With my auto immune disease you can go to a half dozen to even a dozen dr's and you may or may not get diagnosed. I was diagnosed with is POTS (Postural Orthostatic tachycardia syndrome) It can effect your whole autonomic nervous system which is every single system in your body and therefore you can have like 20 different symptoms and not realize they are related. Do you have head aches and get light headed or dizzy when going from lying down to getting up?

    I have arthritis also in my lower back L4-L5 and POTS can be misdiagnosed for fibromyalgia as there are similarities in symptoms. I don't have hip pain but I do have knee pain and it could be related to being vitamin D deficient and cause osteoporosis and I am only 30. I have a rheumatology appointment in like 3 weeks. Yes I know exactly what you mean about the fast walking to the pain in the lower legs as they get tight and you have to slow down to stop the tightness and pain.
    What did you mean when you said when you get up from sitting you have to be hunch over?

    Also with auto immune disorders vitamin D can be deficient did the dr's test your vitamin D?

    *Thinning hair: can be affected due to augementary (skin) system being effected as well as the boils and pilonidal cysts.

    *Fatigue/No motivation: This is the worst one and has plagued me for most of my life till recently. So with POTS you have poor circulation hence the cold hands and feet so with me 25-30 percent of my blood obeys the laws of gravity and pools in my legs therefore not enough blood is going to my stomach which can cause stomach issues if you eat to much and can feel bloated even though you really didn't eat that much and your stomach may hurt sometimes when it tries to signal you when you have to off load what your stomach digested. Not enough blood to your heart you heart has to compensate so it works harder and therefore I get tachycardia and everything I do I use 3x as much energy as someone who doesn't have this issue and it's as if I am running in place all the time when I am doing things and working as CNA you are on your feet all day and moving around so lets say this could be the reason for your sweating because you are using 3x as much energy compared to your colleagues. Staying hydrated is very key and especially since your sweating a lot i hope your drinking a lot of electrolytes like powerade or gatorade. Not enough blood to the lungs - i always thought all my life I had asthma either sports induced or heat related as in humidity or taking a hot shower but not to hot as my body gets tingly and prickly. Every time I went to the pulmonologist my lung capacity was amazing. The sports related was because all my life I was breathing the wrong way when working out and especially when stressed you are supposed to take less breathes not more and do abdominal breathing not chest breathing. Just breathing the wrong way can cause chronic fatigue. It really is amazing once you get it down pat and do it through out the day and you will realize you feel a lot better and have more energy. I even tried it on the treadmill a few weeks ago and I was able to do 5.0, 6.0, and 7.0 without being out of breathe or physically tired at all and I was sweating much less. Ya my legs were a little tired because they are weaker but i felt amazing that I wasn't getting tired doing abdominal breathing. You inhale for 3 sec through your nose as you push out your abdomen and exhale through your nose for 3 sec and bring your abdomen back in.
    So a whole other component to feeling fatigue is not getting good quality sleep and to add to that I have sleep apnea. During the day you have EDS excessive daytime sleepyness and at night I am an insomniac. You can sleep for 20 hours and not feel any better because its poor quality sleep. Not that i was able to get more then 6 straight hours even with sleeping pills. At night was the only time when I actually felt awake and i can think better and the later I stay up the harder it is to fall asleep sometimes.

    *Poor Concentration/Memory loss: So for me because I am so physically and mentally fatigue I am in no capacity to recall what I did or what I came into the room for. If I don't write things down forget it i won't remember it most of the times. It got so bad for me that at times when I was working in rehab dealing with patients when I was doing student internship i could barely focus and pay attention to conversations I was having with patients and colleagues. I am not sure if you got tested for Vitamin B-12 deficiency as it is pretty common with certain auto immune diseases and I was almost deficient. When we stress the B vitamins are the first ones to go and can cause fatigue.
    A deficiency of vitamin B12 can lead to vitamin B12 deficiency anemia. A mild deficiency may cause only mild, if any, symptoms. If the deficiency is not corrected, it can damage the nerve cells. from what I am reading it appears you might be pretty low also and having an auto immune disease dr think if you are in 300's you are not deficient but you should be in the 700's for Vitamin B-12. I was like 267 and I am not even sure if my dr told me I was close to being deficient. I only found out because another Dr did the vitamin B-12 also. So now I take 1 vitamin B-12 tablet of 2500 mcg.

    *Body temp problems: Yes I am the exact same way as I mentioned earlier and now in the winter time my hands and feet can get really cold and as I am writing this to you my feet feel frozen.If you are in a room that is 66 degress guess what you toes and fingers can be 66 degrees happens many times to me. My body is comfortable but if I get too cold then the chills goes through my whole body and I have to warm up I go into my bathroom and put on the heat but when it gets to hot I have difficulty breathing and it becomes uncomfortable plus i think the heat either vasodilates or vasoconstricts my blood when it's hot. I am sure you know the answer to that and therefore I suggest when taking a warm-hot shower after you get out use the shower head and spray cold water on your legs. Yes, you are more hot because you are always on your feet and burning more calories and getting a good work out. The heat could also make you pass out when taking a bath or a hot shower.

    *Numbness/Tingling in my fingers: Yes i was going crazy over this and its mostly the ring finger and ring finger as they are part of the ulner nerve. At times even if you lean your arm on something for a few seconds the tingling radiates through your arm or if you lift your arm to your head. I even had my nerves checked by electrical pulse and it was kinda painful to have electrical currents going through your arm.

    *Miscarriages: I am really sorry to hear about your 3 miscarriages and unfortunately it does happen

    Well i hope I gave you a lot of thoughts and helped explain many of the things . I

    If you do have palpations never go towards energy drinks like red bull or monster they are the worst thing for your heart. I had the opposite effect when I drank one last year and passed out. When I woke up I was so disoriented I had no idea where I was, what time of the day or what day it was. As hard as it is and especially for you since your moving around all day and sweating you probably need 90 oz of water a day and increase your salt intake. The mornings are always harder because in the morning our blood pressure is much lower especially lying down or standing up compared to sitting. Take you blood pressure in different positions and at different times during the day. Mornings and late at night are the lowest but also at times when you don't feel well and may feel light headed. If you have a pulse oxymeter check to see what you resting heart rate is if its high 80's and 90's like mine and check your pulse when your lying in supine and stand up because mine has gone from like 80 lying supine to 130 or higher by getting up too quickly. For me I can get light headed or dizzy or sometimes bending over forward is a no no. I forget to add the part about not enough blood going to the brain which can also effect the memory or concentration because it isn't performing to full capacity.

    Exercise is also key as hard as it is to stay motivated and find time being a CNA but as we both know it your legs need it and I am not saying going straight to treadmill a recumbent bike is perfect because you are more horizontal and your heart doesn't work as hard and stay very hydrated obviously don't over hydrate and take too much water at once but a lot of people get discouraged when they have to pee more then most people and poor circulation can do that. That's why you need to increase salt intake if you have low blood pressure and pee to much it helps to keep the fluids inside your body.

    Vitamin D deficiency can cause many stomach issues like chromes disease and IBS.

    following the list of things I mentioned can make a real difference from feeling like crap and barely getting through to having more energy and feeling much better with less symptoms or the symptoms aren't as severe as they used to be. 1. hydration by water and powerade/gatorade/pedialyte 2. abdominal breathing 3. Exercise 4. staying positive as hard as it is but you got to be fighter and you will feel better but if you let the disorder win and keep thinking the cup is half empty yourr body feeds off of it and you will feel worse your body stresses up and tenses up. 5. laughter - when you get stressed and down on yourself think of something funny and always go back to it. It can be something that happened to you or <somehting you saw>. Smile more, one smile can make an impact in someone's life for the better as they were feeling down and losing hope but your smile just turned their day and maybe even their life around. You see patients all the time as hard as it may seem sometimes to smile as as you are physically and mentally fatigue but it will feel good

    one step at a time we can't jump up the ladder to get to the top we may have

    to climb up each rung in the beginning but if we stick to it, it will get easier and we will feel better. If you can only do 10 minutes on the bike that's great that's 10 min than what you were doing but don't think only 10 minutes that's pathetic lol.

    before you make certain appointments ask the secretary if the Dr deals with this disorder.

    Last edited by Administrator; 12-09-2012 at 09:20 PM.

    Old 12-11-2012, 12:45 PM   #3
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    Re: Does any of this sound familiar to anyone????

    Jmarie, hi & welcome. Just curious: how recent is your bloodwork? What abnormal values were found? Which AI tests were run?

    Before your insurance kicks in, you could get copies of recent labs, to research what you've been tested for. For the cysts, you could research which AI conditions they occur in---but BUT I think they can occur "just because", so you might not have an AI (time will tell). But the list would give you conditions to look into, to see if your symptoms match up with any.

    After your insurance kicks in, you might want to start fresh with a new GP and get a full physical. New bloodwork should include all the standard labs, incl. blood glucose. I'd want thyroid levels, too, because many of the symptoms you list can occur in hypothyroidism.

    I'm sorry to read about your miscarriages. I understand that these are losses we never forget. I bet there are many possible causes, but offhand I know of only one, called antiphospholipid syndrome (APS). It's a blood clotting disorder, sometimes called "sticky blood syndrome". You could find more on APS on the Lupus Board. Also, you could ask on the Pregnancy Board what tests others who've miscarried have had.

    Sorry this is so general, but I hope it gives you some ideas for making a plan. ILet us know how you're doing. Take good care, Vee

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