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Ali110670
02-23-2008, 03:58 AM
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

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robbielee129
02-23-2008, 10:11 AM
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

bluelakelady
02-23-2008, 10:55 AM
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

Glojer
02-23-2008, 02:53 PM
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.

Glojer

Ali110670
02-23-2008, 04:31 PM
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!!!!

Take care,
Ali:angel:

Grapedy
02-23-2008, 09:24 PM
It's a wonderful thing that you like your PCP and that you trust him and that he's willing to go the extra mile to find out what's wrong. That is a crucial part of successful FM management. If your PCP is an internist, you're in the very best of hands because he knows a lot of stuff about a lot of diseases. Multiple disease processes going on at the same time is their specialty. (technically speaking, internists ARE specialists because they treat a specific group of patients and problems)

That said, you should probably see a rheumatologist. There's a good chance you do have seronegative or even psoriatic arthritis. Or even the beginnings of rheumatoid arthritis, though I hope you don't. That's the worst one.

The swelling, red joints and the skin rash definitely needs more specific treatment that only a specialist can provide. Also, have you been checked out for multiple sclerosis?

FM is a vicious cycle. So many different aspects of it feed off each other and you feel you're stuck on a hamster wheel for all eternity. Once you figure out your method of controlling the pain, the wheel will slow down and good days will happen. FM loves to mix in with other diseases too. It doesn't mind at all sharing your body with something else that's horrible.

Kirstee has read "What Your Doctor May Not Tell You" and has had great success using the treatment plan outlined in that book. It's not a miracle cure though and it won't work for everyone. But it's certainly worth looking into if you're ok with that sort of treatment. Me, I'm not ok with that sort of thing so I'll never do it and probably won't ever read the book. But that's just me.

I hope you find some concrete answers soon!

fibrostuff
02-24-2008, 12:32 AM
Has your Vitamin D level been checked?

I had the pain similar to what you describe, I think, in my calves and bones of my legs. I described it like growing pains as well as horrible knot feeling, and burning. My Vitamin D level was extremely low. I went on supplements and while some of the pain is style there, that knot and growing pain is not at all like it was.

You mention osteo-something (sorry! forgot how to spell it) which sounds like a calcium thing. Low Vitamin D can affect calcium.

bluelakelady
02-24-2008, 01:31 AM
let me be the first to sit in your cheering section.
you know kiddo the exercise does hurt. it must be done tho. for you. i used to come home, actually drag home, after exercise and drop in my bed for the next couple of days so i could get up and go do it again. eventually i was able to go and then have energy after for my day. i do not end up in bed anymore. i am stronger than i have been in years and years. it feels great.
sometimes the tears we cry are for the old person we were and are no more. grief is normal and you must grieve in order to heal within so you can move ahead as your new you.
depression sucks. my heart goes out to you.
peace,
blue

Ali110670
02-24-2008, 11:33 AM
Thank you again so much for your responses. Fibrostuff, I am not sure if my Vitamin D levels have been checked, but yes, with my Osteopenia, I do have to take Vitamin C and D Supplements as well as Actenol which helps with bone mass production. I do believe the feet and calf pain I am feeling may be do to RLS. My heals hurt alot and I notice when I am sitting still with my legs out and watching a tv show that this is when I notice it the most, I have to keep moving around. My husband also says that I kick him alot in bed, which I did not know I did...Oppsss:(

Grapedy, thank you for your support and yes my PCP believes I may have seronegative arthritis. My grandmother does. As many times she was tested, the doctors finally diagnosed her with this. I believe this is why the PCP wants me to have the MRI of my hands this coming week. To check if their has been any deterioration. If everything comes back negative, which it probably will, I think he is going to still treat me with some type of auto-immune medication, as he believes it may be dormant?

Really after speaking with my husband, this is all I really want. I want and need a plan of action. That is where alot of my depression and hopelessness is coming from. My doctor says he "believes" I have this and this, but then gives me no real direction after that. I need medicane, I need direction and I need a plan of action. My husband said last night, lets right out our plan of action and bring it to him. Lets start with the Fibro, this I have been diagnosed, now lets find out what meds or therapy I need to start minimizing this pain. Then lets figuare out what to do with the sleep apnea, whether surgery or something else (already have used CPAP and is not effective for me), also continue losing weight or trying to with exercise, and food control. If this does not work after a few months, THEN and only then will we consider WLS. I agree with my husband, not having a plan and direction has made things so much worse to deal with. I can now try and focus my energy on getting better if I know where I am headed. We also went to the library last night and got some books to read, they have been very helpful and my husband is reading them with me as well.

Well thank you all again, I love being on here and I hope that I will continue to be a part of this community. Fibro is chronic and I will need the support as well as all of you. Take care and feel free to email me directly if you have any other suggestions that may help with my flare ups.

Blessings,
Ali:angel:

moderator2
02-24-2008, 12:51 PM
Please bring your attention to the posting policy.

Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.

Glojer
02-24-2008, 01:06 PM
Ali sounds like you have a plan and that is great and best of all you have the support of your hubby. Just remember two words, 'Baby Steps'! That is where it all starts, one little step at a time. Get your action plan going, cut out one or two bad things from your diet....sugar is really bad for most fibro sufferers, I always start there. Don't make a drastic cut in calories, just step down a little at a time. For exercise start doing 30min. a day routines and do them every other day. You could break that 30min down to 3-10min workouts during the day. Then vary your workout, walking one day and weights the next or stretching another day. 'Baby Steps' and don't get frustrated and give up when you start to flare or have a rough time, just do what you can and keep going. And definitely come back to the boards for venting and encouragement.

Glojer





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