Last post Wed, Jul 30 2008 2:54 AM by beck1966. 13 replies.
I would love your opinions on this. I am sixteen years old and I have had pain for two years now. I quit my high school soccer team, started working less hours, and don't hang with friends near as much as I used to. I am usually in too much pain.In school I feel very detached, and its hard for me to concentrate. I have a hard time remembering/recalling things like what I ate for breakfast. To top it off, I am usually very tired. I may get 9 or more hours of sleep a night and still feel tired in the morning and throughout the day. I have been suffering with depression for quite a long time, and I have social anxiety. I get headaches regularly and i have been feeling a reoccuring numbness in my fingers in toes lately.Also, I have complained of upper chest pain for awhile now. I am on birth control to help my unbearably painful periods. During the night I usually wake up once and need to walk around or stretch because my legs feel very restless and I am uncomfortable. Little things seem to be more intensely painful for me than other people, and not many people believe I am really in all that much pain. I do not like to be touched very much, and i am very sensitive to light while i have my headaches. Also, certain spots on my neck are very painful to be touched and those correspond with the sensitive spots doctors use as a guideline for fibro. Im not sure about the other sensitive spots but I have noticed the pain i feel in my neck if it is ever touched before I was even aware of fibro. All these symptoms seem to fit quite well with fibromyalgia.
Also, I have been to the doctor countless times in the last year. I have had blood tests taken to test for lupus, cancerous tissue, mono, lyme's disease, etc. All which came back negative. I had x-rays taken, they showed nothing. I was even sent to another hospital to have a bone marrow biopsy done to test for possible leukemia, after I had an illness that sent my blood count into scary low numbers. My doctor continues to have my blood tested but it has been fine for months now. Im afraid he doesn't quite consider fibromyalgia a possible cause since its not exactly proven for a cause. He put me on naproxen for the pain a few months ago, and it eases it a bit, but usually not fully.
I feel like this is finally my answer. Any advice?
Hi Nicole, I'm Sandy. I have Fibro. and arthritis. It sure sounds like Fibro. Ask you primary dr. to send you to a rhumetologist. They are the ones that can diagnose it the best. There are no blood tests or x-rays that will tell them. There are tender spots on your body that are very sensitive to the touch [11-18 differant spots]. I can't even handle a blood pressure cuff on because the pressure hurts really bad. I you need someone to talk to just give me a shout and I will be here for you. Take Care Now and Gentle Hugs, Sandy
To me it sure sounds like Lupus, but since you have been tested for that I am assuming that is properly ruled out. I am a male with Lupus, and I have many theories, but one is that Fibro is simply a category to put you in until they realize that there are other auto-immune disorders in the world that still have not been defined. I feel that Chronic Fatigue, Fibro, Lupus, and Arthritis all very likely have auto immune relations and may be very similar to each other on some level. But we still have so much to learn about auto immune disorders, so it may be a while until you find the proper answers you seek. Have you been tested for Celiac disease? That is intolerance to Gluten, which is auto-immune and also has similar symptoms you describe. I would assume more stomach issues, but something to consider. I would also recommend a good rheumatologist that will really listen to you and not disregard you as having "female issues" or any of the other horrible things I have heard. Good luck.
Hey Nicole! Welcome to Disaboom. Yes, it sounds like fibro to me, or even possibly lupus. I would go to a rheumatologist, as Sandy has suggested. You're in my thoughts and prayers. Hang in there!
Becky
If it were Lupus, photosensitivity would also be a major noticeable symptom, and an autoimmune disorder would have shown in the blood tests. To me it does sound like Fibro, which I have as well, but it's hard to convince doctors of that. The advice about seeing a Rheumatologist is a good one, but in the mean time, I'd start a gentle exercise plan, work on a diet free of processed foods, sugars, things that could be triggering pain, and get help for depression. Even if it is undiagnosed Fibro, there are many steps you can take in the mean time to help yourself. Don't let a doctor's lack of knowledge leave you living miserably, do some reasearch and see how you can best help you body and get yoru life back. There are plenty of great books on treating chronic pain/fatigue disorders such as "Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual" by Mary Ellen Copeland and other publications by that author.
It is very very hard to get a diagnosis sometimes, and you are very brave to have to stand up for your rights and continue to say, "I am sick!" when your tests are negative. It took me 8 years to get diagnoed (not to discourage you . . .). It is not true that immuno-suppresive illnesses like Lupus and Scleroderma show in the blood, on first or later testing. Only a certain percentage do. It may also be what is termed a "mixed connective tissue disorder," which applies when there are or are not the typical antibodies present.
Then there is the old friend fibro. As many will tell you, no sure tests for that. The advice to get a referral to a good rheumatologist is excellent and that is the best next step. In my experience (I also have a fibro dx), certain kinds of exercise are excellent, the best being gentle stretching, and diet/nutrition that avoids inflammation can be a big big help.
Disaboom recently ran a feature on the connection betweeen depression and pain--it is not surprising that you are feeling low. Seeing a therapist may help, or getting medication from your doc, to cope with this end of things, may at least help alleviate this end of your problem somewhat.
The main thing, I have found, having scleroderma (that sister to Lupus, and also MS), is to give your body the rest it needs, try to avoid stress, and don't ask more than you can give. It may be hard to believe, but the answers will come to you in time. My very best wishes to you. bonnie
Bonnie, Is there a test for Scleroderma. If so what is it? hope you are having a good day. talk to you soon. thanks Kat
I found some info on comp that I would like to share. In 1987 a doc by the name of Don Goldenberg published a paper in the Journal of the American Medical Assoc. and called the Syndrome Fibromyalgia. It was First Recognized as an illness and a cause of disability in 1987 by the American Medical Association. He said " Fibromyalgia is a chronic painful condition primarily producing symptoms in the musculoskeletal system. This condition is characterized by widespread muscle aches and pain, significant fatigue, and sleep disturbance. The pain syndrome (collection of signs and symptoms) is difficult to diagnose since many of the symptoms are very non specific or vague. People with Fibro hurt all over but common painful sites include the necck, back, shoulders, hips, knees, and hands. The symptoms can wax and wane over time and severity of symptoms vary from person to person."
I personally have not had any "Non-Specific or "vague" symptoms lately, they have been very VIVID, and VERY SPECIFIC. LOL The journal is very informative and that was the only part I had a small issue with.
anyway I do hope that gives you some encouragement when talking to one of those UN-informed Docs. It has been recognized by the American Medical Assoc. so why do the majority of Medical Assoc. not know anything about it?!!?
Jack, do you know of any other muscle relaxers to mention to my doc to try. I have taken Flexerill and Skelaxin. but would like to try something else. talk to you soon.
To all my fellow fibro villagers I hope and pray you have a pain-free, wonderful Day!! XOXOXO >^..^< Kat
The "test" for scleroderma (of which there are several types, I have scleroderma-diffuse), is the same as for Lupus, an ANA blood test. HOWEVER, the test is not conclusive as the antibodies do not always show up, and for me, did not show for many years. Firstly, I was not tested, and then, when tested, they were not present. So . . . it's very much by symptoms, which in this case, unlike fibro, manifest themselves very particularly.
Scleroderma is a hardening of the connective tissue, and for some people starts with a restriction of the facial muscles, a tightening if you will, or for those with "diffuse," it manifests in the organs as the connective tissue surrounds organs (for me, it was my intestines and colon, which became paralyed). The connective tissue later surrounded my lungs, resulting in COPD. [BTW, this whole process took two decades]
Reynaud's Sydrome is a good first indicator of both illnesses. Again, a fine rheumatologist is the best bet to look for symptoms and do the work-up. There are further tests if there is the diffuse variety and the GI tract is involved--called motility tests where irradiated pellets can be swallowed and then monitored for transit time (mine took 10 days on the first test). That took a GI Motility specialist, but the rheumatologist is the best first place to start.
P.S. I take Baclofen for a muscle relaxor.
P.S.S. The source of your pain may not be the cause of your pain, as there is a syndrome known as referred pain, which you may want to research.
Good luck, bonnie
Nicole,
I am so sorry to hear sweetheart that you have this illness at such a young age! You poor thing. I wish I could give you a hug. I have a daughter that is 13 and I am watching her because I see little things that make me wonder if she is getting this also. I have Chronic Fatigue Syndrom which was diagnosed first in 1991 because I got the "flu" and it wouldn't go away. My doc did some bloodwork to test for what he called "titers" in my blood. That came back that I had the epstein barr virus which is usually connected or the cause of CFS. I was diagnosed with fibro about 5-7 years.later. I have been fighting for years to get help. I finally asked my doc to refer me to a reumatologist. She has been very helpful. I would suggest as Sandy did that you see one too. They really are the best to deal with Fibro. I am to the point and have been for 6 years that I have to see a pain specialist too. I had my appendix rupture in 02 and got the bad infection with it that you usually die from. Anyway that caused me to get a lot of scar tissue called Adhesions. And I got a hernia from the incision. And have had that repaired 4 times. Along with some other surgeries. So darling, you keep fighting for the answers. Don't give up until you get the answers you need and the help you need. You hang in there. You will find many helpful and loving people here at disaboom.
Gentle Hugs,
Pam
