My name is Ali and I am 37 years old. I live in Gahanna, Ohio which is a Suburb of Columbus, Ohio (Go Buckeyes!) I am new to the boards and am sure will have tons of questions. The reason why I started looking for a forum to discuss my problems is due to a recent visit to my PCP. I had brought a list of "ailments" that I have been complaining of for years in the attempts to start getting these issues addressed. After speaking to him about various pains and problems I was continually having, he suggested that I may have connective tissue disorder, or some form of arthritis.
Okay, okay, I have heard this for sooooo long, "you may have this" or you "may have that". After batches and batches of tests and different doctors, I still cannot get a diagnoses. On the positive side, I at least have a PCP that is very agressive and sympathetic to me and my pain, but he is only a PCP and not a specialist. I have asked to see a endocronologist but he really wants to continue treatment by specific tests until he gets closer to the cause. He believes it is seronegative arthritis, connective tissue disorder or some type of arthritis. He is also 100% positive I have Fibromyalgia on top of everything else. After doing some research on my own, I believe I may have Cushings syndrome, as I have many of the same symptoms of this disease.
Honestly, I don't have any answers after 5+ years and I cannot keep going on like this. It is a neverending circle of pain. I was hoping with some of you that you may be able to relate to some of my "ailments" and help me sort or narrow down possible diagnoses. I know we are not doctors, but we know
ourselves better than doctors do and what are symptoms are. Okay well here is some of my list, believe me it is long....
What I know I have (been diagnosed)
* Sleep Apnea (not under control)
* Fibromyalgia (Doctor will not give me anything to eleveate pain until after my bloodwork comes back)
*GERD
*Barrotts Esphogaus
* I am overweight, 254 LBS to be exact and am having a very hard time getting the weight off. I have been attempting to lose the weight by doing the Slim Fast Diet, along with taking Adipex and also joining Jazzercise in my area. (weight is still not coming off)
*Pre-diabetes
*Ulna Nerve Damage
*Anxiety
*Osteopenia
Not been diagnosed and symptoms of the following:
*Horrible joint pain, especially in my elbows, hands, wrists, hips and knees. When I exercise it becomes so much worse, cold makes it worse and stress
*Reddening of the skin, on arms and chest, looks like I am sunburned all the time (no one I have talked to knows what this is caused from)
*Reddening of the index finger on the inside, it forms a distinct line that get very red when I am emotional or tired. Very swollen.
*Burning feeling on skin all the time, at times my husband cannot even brush his finger tips over a certain area of my arms or shoulders without me tensing up and feeling a huge jolt of pain.
*Feeling in bones as I describe like when you were a kid and someone gave you an "indian burn", a sort of twisting, tight pain.
*Extreme Fatique
*Major Irritability
*Loosing my strength in my hands and wrists, unable to hold anything heavy for a short amout of time, hard time grasping things without dropping them.
*If I hold my arms straight up in the air to brush my hair, my arms and hands start becoming numb.
*Unable to sleep at night
*Recently loose bowels and and unable to hold urine for a extended period of time without leaking (sorry if TMI)
*Buffalo Hump
*Aching in my legs and knees at night while in bed especially when it was cold or rainy and in my fingers too. My fingers lock up when i am writing, and when I am sitting and my legs are out straight, I become very uncomforable in my thighs and feet, they ache with irritation, not aching from overuse, I suppose you could even catorgirize as RLS?
This is all I can think of right now. I truly hope some of you can relate to these pains and let me know what you have been diagnosed with or how you have remedied yourselves along the way. I can tell you that I will be getting more bloodwork taken this coming Wednesday, I am sure it will be negative like every other time, but who knows. The only positive test results I have gotten to date that is high is alkaline phosphote levels, high liver enzeyme levels, and high cholosterol. My doctor also wants me to take a 2 hour glucose level test and see how I tolerate that, and also I have scheduled an MRI of both of my hands to check for Synovitis. I have had an xray done in the past which turned out normal, but he believes an MRI may show something different.
Alright, I am sorry for all the rambling, I just really need support and I hope to learn a wealth of information from all of you along the way. Thank you for listening and take care!
Ali - My suggestion is for you to see a Rhuematologist. They specialize in arthritises. I found that acupunture really helps with the pain. My thought going into it was...Well, what's one or two more needles going to hurt! And they don't by the way. The needles are so small you don't feel them. Good luck getting a diagnosis! But my opinion is that a PCP isn't going to help you much.
Robin
welcome to the boards ali,
if you trust your doctor that is everything. i have 8 of them.
alot of your symptoms fit both arthritis and fms. what is a buffalo hump?
may i ask how tall you are? your weight has alot to do with your health/pain as i am sure you already know. i was also overweight and it was a long journey getting it off. i did tho. i have had several strokes which keep me in p.t. i started physical therapy for fibromyagia related pain and weakness. i was just under 200 then. i started out in a heated pool and worked my way up to the machines i now use. it has taken 3 years to get my weight in a safe range. most of all it helped me with my pain levels and increased my activity.
do you have a gyn you can follow up with about the urinary loss and loose bowels?
i want to reassure you that while fibromyalgia is weird and bizarre in its symptoms, one can live well with it. gotta get over the fear first. fibro wants you afraid. it feeds on it. wants you anxious. dessert to fibro.
one of the wisest things i did just for me was find a shrink and use him up for 9 years. i needed new ways of living my life as it was changing so much due to health.
living with health issues is hard on the mind. at least it was on mine. i disliked being afraid all the time. those years of hard work and really looking at myself were worth it. i do not live in fear of my body nor do i get angry at her for being what she is.
while you may not find all the answers to your health questions here i have no doubt you will find peace. there are many fine knowledgable people here.
again welcome.
peace,
bluelakelady
Hi Ali, welcome to the board. I too suffer with the joint pains everywhere. I am sure if your doc is aggressive he has already done and ANA count on you. Another thing you might want to be sure is working properly is your thyroid. You need to stay on top of your blood work for your thyroid and persue it, cause a lot of PCP docs don't really have the training for that and if your numbers come out within the range, even if they are right at the top of the range, the doc tells you it's ok. I did not need a referal from my pcp to see another doc so I just made an appt with and endocrinologist and once I started getting treatment for my bad thyroid I started to feel better. It does help to lighten some of the joint pain, but is a general overall better feeling.
My rhuemy that treats my joint pain says I have CTD and myofacial pain. He calls it almost lupus. You might want to see a dermatologist or dermopathologist for your skin redness. My inflammatory condition, which is how everything is referred to about my joint pain is treated with medication but I still do not have a difinitive diagnosis. My goal is to be treated for the symptoms so I can go on with my life, if has been a long journey and still continues for me.
I too struggle ...... and struggle......and struggle......did I mention how hard I struggle......to get weight off, but boy can I put it on with just a thought of food. I have lost weight over the years, and I do mean years. It took me 3yrs. of struggle to lose 30lbs. and I hit a plateau. I did put some on again when the fibro and things got bad, but I thought when I got my thyroid in better shape I would be able to lose it easier. No such thing!
The point is to not give up on your health or your weight loss. It is an uphill battle but the fight is worth it, because you are worth it.
Thank you all for your help and support. I really need it right now. Honestly, the last few weeks have been so terrible. I am getting quite depressed and it is not only affecting me but also my family. As some of you have mentioned, this "disease" can be quite fearful. I get very upset with it, as I seem to have no control over it. The doctors don't help, I cannot find any answers on how to help myself with the pain on my own (herbal help), and I feel like I am living in a shell of my own body. I feel so defenseless and weak. When and if I try to make an effort to do the things I need to do (lose weight), it is like a whirlwind of emotions and pain. I feel trapped in a vicious cycle.
The way I see it is, first I need to lose the weight, as the weight is causing alot of my problems, sleep apnea, pre-diabetes, some of the joint pain and the GERD. In order for me to lose weight, I have to watch what I eat, which I do and the weight does not come off, they I have to exercise to maintain body strenghth and lose calories. Well if any of you know what it is like to workout hard for an hour, try going to bed at night and then waking up the next morning and feeling like someone has completed invaded your body. You ache from head to toe, you feel like you have the flu and absolutely no energy. Additionally, when you are unable to sleep at night and have chronic fatigue, this will only exaspurate the problems. Then I end up getting frustrated, which leads to stress which then leads to anxiety attacks.
So as you can all see, I am quite a mess and yes I am trying very hard to get the help I finally need. I cannot take living in this body anymore and I am going to do whatever it takes to be a well person, even if it still involves some amount of pain. I am going try stay very active on these boards, as I feel that talking about it with others that are going through it will help me in the long run. Even though I explain to my hubby and children what it is I am dealing with, they will NEVER truly understand unless they have it.
Today, I am going to the library and going to try and find some good books on Fibro. I did read a book title that someone suggested and wanted to see if any of you have read it and if it helped you. Also of any other books that may be available? Maybe support groups that I could look up to? The name of the book is "What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease (What Your Doctor May Not Tell)"
Alright, thank you for letting me vent. I have cried enough this week and felt sorry for myself, it is about time I take some real action!!!!
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