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Just here to vent!

Moms View Message Board: General Discussion: Archive March 2008: Just here to vent!
By Jtsmom on Monday, March 10, 2008 - 01:49 pm:

Well to give a little background, I have been going to the doctor on and off for about 5 years with the same complaints. This past year they have been extremely worse and almost unbearable. My skin and muscles hurt so bad that I can't move some days, almost like extreme flu like symptons (no fever) I am so tired that even when I am not hurting, I can hardly get off of the sofa. Of course it is even more of a struggle trying to be a good mother, which I feel like I am failing at this year, because I feel so bad. The doctor has taken a TON of blood at just about every visit this year (6 so far). Today, since I guess he can't seem to find what the problem is, he suggested that maybe I should see a Mental Health Specialist. I have nothing against doing that, if that was what the problem was, but it is not. I am sick, physically!! I don't know what the probablem could be and on one hand I am thankful that there has not been anything very serious come up, but at the same time, I need to know what is wrong. Anyway, that is my vent for the day. Thanks for listening.

By Bea on Monday, March 10, 2008 - 02:04 pm:

I suggest that you might have Fibromyalgia and Chronic Fatigue Syndrome. It sometimes goes hand in hand with depression, but they produce REAL physical symptoms. Lyrica is one of the newer medications used to help with the pain and fatigue. Find another doctor who will stop patting you on the head, and take you seriously.

By Bobbie~moderatr on Monday, March 10, 2008 - 03:03 pm:

Joelle, it sounds like Fibromyalgia to me too..

check these out

Fibromyalgia:

http://www.emedicinehealth.com/fibromyalgia/article_em.htm

Chronic Fatigue Syndrome:

http://www.cdc.gov/cfs/cfssymptomsHCP.htm

I have been diagnosed with Advanced Fibro for 2 years and a few months but I had symptoms as far back as I can remember, that were treated and explained away.. I apparently had JRA as a child and it triggered the Fibro.. I could go into a book about my symptoms, when they started, how long I was actually sick before I had a name for what was going wrong with me.. But I am sure you would rather have answers.

First you will need to find a Rheumatologist that specializes in Fibro and Chronic Fatigue Syndrome. Neither are diagnosed through blood test. They are a list of criteria you must meet in both cases, symptoms and a physical.

I see a Rheumatologist and a Pain Management Doctor. There is no cure for Firbo (at this point). I take seven different medications so that I can function. But two years ago, I wasn't functioning at all. I spent the winter on the couch, under a pile of blankets, wondering if I was going to die most days and wishing I would the rest... I questioned if I was off my rocker, people just don't feel this bad for no good reason. Getting a diagnosis and reading as much as I could about it has been like turning on a light bulb for me. Everything was right there in front of me. AND, I wasn't alone in my suffering. I have spent the past two years managing my situation, listening to my body, resting when I have to rest and limiting my physical activity on days, when I know the next day will be a physically draining day. I have learned to cut myself some slack, on cold winter days because I am not worth a darn. I only tell you this because if it is Fibro you can learn to live around it... It just takes learning to listen to your body and figuring out what matters most in your life.

Get in to see a Rheumatologist..

By Karen~admin on Monday, March 10, 2008 - 03:14 pm:

Have you been tested for Lyme disease?

By Kaye on Monday, March 10, 2008 - 03:30 pm:

My mother was told the same thing. Turns out she had Multiple Sclerosis. Dr's can miss stuff and they can just be wrong. I suggest going to a second dr and saying simply, I feel horrible, this has lasted a long time, can we please run some more tests and get to the bottom of this. (an mri is the standard for ms).

By Jtsmom on Monday, March 10, 2008 - 03:46 pm:

Thanks to all of you. Bobby you are describing exactly how I feel! I had arthuritis (sp?) when I was little brought on by sever infection in my tonsiles but it was not JRA. I have never thought to tell the doctor about it before. I haven't had any problems with it since I was about 10 or 11. Is it worth a phone call to tell him?? I have mentioned Fibromyalgia to him because over the years, everytime I do research on the web about my symptons, that is what comes up. He didn't respond. I don't think that I am coming across as strong as I need to. That has always been my problem!! Should I just make an appt with a Rheumatologist on my own or does my doctor need to do it for me?

By Bobbie~moderatr on Monday, March 10, 2008 - 05:13 pm:

I would schedule a new appointment, print off the symptoms list, and walk into his office with everything that is (or has, symptoms can come and go, some are stronger than others some days etc..) effecting me high lighted and tell him I want a referral to a Rheumatologist, (if your insurances requires a referral for sure). Call your insurance and double check. If he won't listen, see the facts, and if he won't give you a referral, I would be looking into a new primary care. Him just brushing you off (or so it seems) is a bunch of bunk. He should be pursuing all avenues to get you relief and mental health help isn't going to get rid of the pain. Either way (needing a referral or not) I would research the Rheumatologist in your area and see what they specialize in. They specialize just like any other doctor.. You want one that has treated Fibro patients, the longer the better.. I have been lucky enough to live with in a reasonable driving distance to OSU. I see Kevin Victor Hackshaw, who is an Associate Professor of Immunology/Rheumatology,
Molecular & Cellular Biochemistry. Dr. Hackshaw's specialty interests are fibromyalgia, chronic pain, systemic lupus ergthenatosus and vasculitis.

I had symptoms since I was a child and every doctor I saw excused them away.. They treated everything at face value and never looked deeper into what was going on with me. It took me getting really sick and me getting mad about it to get me researching. It took me demanding everything else ruled out.. It took me taking in the information on Fibro and presenting it to my dr for him to see everything connected on the paper. It wasn't just him that missed it though, I have had many doctor's over the years, my pain managment dr, my eye dr and my dentist had noticed issues that didn't add up until we knew I had Fibro.. Basically, I had to get myself the treatment I needed. Once I got the ball rolling everyone else fell into line and 2 years later my life, although not the same, is better.

By Tunnia on Monday, March 10, 2008 - 07:22 pm:

I don't have any personal experience with Fibromyalgia, but from reading I have done it seems that it is missed and dismissed quite a lot. It sounds as if your doctor is not working with you. You need to be heard and you need a doctor that will listen and try to find the root of what is making you sick. A rheumatologist would be a good next step, IMO. I'll keep you in my prayers.

By Jjb on Monday, March 10, 2008 - 10:37 pm:

It could also be rheumatoid arthritis...I would definitely get an appointment with a rheumatologist. I have psoratic arthritis and for years my primary care doctor told me it was in my mind. Rheumatologists are used to patients who have similar symptoms to yours and they can help get to the bottom of the cause. There are so many good medications and treatments available. As far as referrals go, it depends on your insurance policy. I didn't need one, but I know others who do.

By Crystal915 on Tuesday, March 11, 2008 - 12:33 am:

(((Joelle))) I also vote for seeing a rheumatologist. I've had a lot of the same symptoms you describe, and have been (recently) DXed with CFS, and have been referred to a rheumatologist, with suspected Fibro. I also noticed that when I started anti-depressants it did improve some of my symptoms. The illnesses ARE real (I really struggled with the CFS diagnosis, because I thought I was just going insane, and no docs could tell me what was wrong, but it IS a real disorder.) In my case, they did rule out RA, but we won't know more until my appointment with the rheumatologist next month. My mother was recently DXed with MS, so that is also a concern. All said, since I am in the process of a diagnosis, I totally understand how frustrating and painful it is. Good luck, and hang in there. The squeaky wheel DOES get the grease, and in this case, I think you should "squeak" to another doctor, one with more experience with these types of disorders. More hugs, vent here any time!!!

By Hol on Tuesday, March 11, 2008 - 03:41 am:

Yes, you definitely need a rheumatologist. Have they ruled out Lupus? You are right in the age when RA, Lupus and MS most frequently manifest (32). My DD has RA. She is 35, but it started ten years ago for her.

Also, have you had your thyroid checked? Hypothyroidism can cause your symptoms. The rheumatologist can test for that as well, since a LOT of your type of symptoms go hand in hand with thyroid disease and autoimmune disease.

It is frustrating because the pain causes depression, and the depression causes pain. I suggest going to a university medical center if there is one close by.

(((HUGSS))). Hang in there. If you are persistent enough, you WILL get a diagnosis.

By Rayelle on Tuesday, March 11, 2008 - 01:00 pm:

Hugs to you! It's so frustrating to not know what is going on. I didn't have the exact symptoms as you are but I was having joint pain, fatigue, chronic yeast infections, over active sweat glands. I had 2 doctors tell me I had to learn to live with the monthly yeast infections saying it was probably hormonal and had to do with my cycle. Ditto on the perspiration. I have some blood work done about my thyroid etc nothing came up. I was put on prozac which was a horrible thing for me. Turns out I had a food intolerance. A new world opened for me. I hope you get an answer soon.

By Jtsmom on Monday, March 17, 2008 - 07:27 pm:

Just wanted to update yall. I got my blood work back today and whatever they tested for most everything came back o.k. They ruled out CFS, and my thyroid was fine. He said that the only thing that came back unusual was that I had some swelling somewhere. I asked him what did he mean, joints? Muscles? tissue? He didn't know and is going to refer me to a rheumatologist. What does swelling mean? I am getting so frustrated!! Thanks for listening again.

By Cybermommyx4 on Monday, March 17, 2008 - 07:31 pm:

Probably your "sed rate" was up, which indicates inflammation somewhere in the body (but of course the test does not tell them where!) It is great that you are going to see a rheumatologist...he/she will know where to look. {{HUGS}}

By Bobbie~moderatr on Tuesday, March 18, 2008 - 12:14 pm:

Swelling? He got this from a blood test?

By Bobbie~moderatr on Tuesday, March 18, 2008 - 12:26 pm:

Sorry blond moment..

When your platelet count is elevated then you have inflammation present in the body. He doesn't know where the swelling is, because it isn't specific, it is a generalized test.

I am looking into food allergies and such around here... Best of luck, sounds like you have gotten some answers, just not complete answers yet. Best of luck...


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