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STORIES FROM OTHERS WITH FMS, HMS, CFS/ME AND OTHER RELATED CONDITIONS
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Hi Everyone!
Sharing your experiences with others can be a good coping tool therefore this page is dedicated to other people who want to share their stories and experiences of FMS/HMS/CFS/ME/&OTHER RELATED CONDITIONS with others. You can add your own story for others to read by contacting me by email. Include your personal story, your experiences or anything else you want to be featured on this page. Then I will add it to this page for others to read. I will also add your email by your story and your website if you have one unless you specifically state in your email not to. This way others can contact you after reading it. Thankyou so much to everyone who has contributed!
SHEILA (Submited 20th October 2006)
Age 37
My story is a continuing saga, but you’ve all heard it: chronic pain and “bucking up”.
When I was a teenager, I experienced migraines and pains in my neck/shoulders so severe that it was like I was lifting weights with my shoulders. The muscle in the right side of my neck was so built up that I had a permanent tilt to my head. I was in constant pain, but my mother didn’t really believe me, and I’d spent my whole childhood being called a whiner, and being told to “buck up”. At one point, when I was a child, my mom gave me an aspirin every night before bed, just to shut me up. Over the years, I’d learned to ignore it, get past it, and it really did fade into sort of an unconscious clenching, where the pain was there but no longer impinged on my conscious mind. Other than fatigue and a general, constant feeling of malaise, I was able to forget that there was any real pain. I’d lived for so long, being told that I just had a low threshold for pain, that other people had pain and didn’t complain or feel it as severely as I did, that I’d come to believe it, and quit complaining, because no one took me seriously. Every couple of years, I would change doctors, and they would explore the possibilities for me, usually up the same blind allies, and would come back with the same answers for me: I was perfectly healthy, there was really nothing wrong, but it I liked, we could try such-and-such medicine and, if it helped, it would tell us what was wrong.
Let me tell you… I hate medication. Especially if it’s intended to diagnose. I ended up on Prozac, in my early twenties, for about 3 months and it actually triggered psychotic behavior (they don’t tell you this, but so-called anti-psychotic drugs, if they aren’t needed, can actually cause psychosis as well as other emotional imbalances, if given to people who aren’t psychochemically imbalanced in the first place). Don’t listen to the rx companies, folks: these drugs are NOT safe to be used by people who aren’t imbalanced. They are for CLINICAL depression, not SITUATIONAL depression. And, although I know they have been experimenting with use of these rx in treating fibromyalgia, I cannot believe that they are the “cure”. They not only didn’t help me sleep, they actually caused me to be more fatigued during the daytime, and caused insomnia! Maybe they might help some people, but I’m frightened to even try them again.
Anyway, after over a decade of tests and xrays and doctors and medicines, I finally gave up. No one had an answer for me, and since it wasn’t getting worse, and I wasn’t dead yet, I just figured there was no point asking about it anymore.
Then the back pain started. I was pregnant with what would have been our first biological child (and actually ended up being my second miscarriage, exactly 10 years from my first one). My first symptom of pregnancy was actually a mild backache. As the pregnancy progressed, the back pain did, and there were days when I would cry all day, I hurt so bad. It was worse at night, and would wake me repeatedly, so that lack of sleep mixed with pain and hormones was causing pretty severe mood swings, but the doctors explained it away as part of pregnancy: the ligaments become more elastic, which can cause uterine cramping and backache. Never mind that this is not supposed to happen until at least the second trimester, and I’d had both pains from the week before I discovered my pregnancy. The pregnancy ended in the 4th month, but the back pain never did.
Eventually, the nighttime pain progressed to my entire body. Every joint felt as if it were burning up, when I’d wake (as I did repeatedly during the night). If I laid on my right side, I would wake feeling as if my right shoulder, elbow, hip, knee, ankle (every joint that touched the mattress) had been pulled from the socket: it burned, it pulsed, it was more than I could bear. I switched to my left side, even though that is less satisfying sleep for me, and after a couple of weeks, that side, too, would wake me with the same pain. Lying on my back was no better, because the backache would become overwhelming, and even my FEET would hurt from the pressure of the blanket, and my heels from the pressure of the mattress. After about 3 months of this, it carried over into my daytime hours. I noticed a grinding in my right shoulder, and could not put a jacket on, or a seat belt, without wincing/gasping with pain. I went to my newest doctor, and confessed only the newest pain to her, and I’m ashamed to say I cried in front of her, but I hadn’t slept more than 2 hours at a time in 4 or five months, and the fact that my sleep was not only disturbed, but disturbed my severe pain, that I had trouble lifting my children and caring for them, and the pain and fatigue were just to the point where I could not control my emotions anymore. At home, I was snapping at everyone, and crying even when I was happy!!!
Guess what? She’d heard of fibromyalgia (and actually, my mother finally took me seriously, as well, and demanded that if the doctor didn’t suggest it, I ask to be tested for FMS). Even though I’d only just been to a doctor less than a year before, for the back pain, the other doctor, and no other doctor in 17 years of “complaining” even thought of it. She tested me for the usual, to rule them out (lupus and RA) and then sent me to a rheumatoid specialist to be checked for FMS. I was convinced that I had osteoarthritis, since it runs in my family, and since the pain was in my joints. The specialist did a little poking and squeezing and said he “thought” I had FMS and said, “there’s nothing you can do about it, medically. Go online and research it yourself, and try to see what works for you.” Uh-huh. I’m a busy mom of 2, and sometimes rarely even get to check my email more than every two weeks. I should spent hours chasing ghosts? Well, I did research it, and found nothing to help, and confused/depressed I again retreated into the “buck up” mentality. Eventually, my daytime pain eased again, and the nighttime pain settled mostly into my back again (with the exception of “aches”—not strictly pain—in my elbows and wrists).
Two weeks ago, I went to the doctor, scared to death. I was having visual and aural disturbances, clumsiness, confusion and nausea, along with stabbing, cattleprod-like pains which coursed up my back and down my leg. This was not the “buck up” pains of teenagerhood, nor the ones I’d had since my miscarriage. We’re still not entirely sure what symptoms belonged to what, since they have mostly gone away, but when I visited her (again in tears and frightened), she said, “enough is enough, I’m sending you for therapy”. I had my first therapy session, to evaluate and diagnose my pain, this week, and DING-DING-DING, we have a winner! The first thing, upon walking into the room, the therapist said, “I think you’re hypermobile. Can you touch your thumb to your wrist?” And then she made a horrible, cringing face as I did just that. Isn’t that normal??? Well, in some people, maybe, but it seems that I have HMS. From the way she describes it, I wonder if that’s the pain I feel in every joint when pressure is applied for long (like sitting or lying for longer than an hour). She couldn’t say, since she was only charged to explain the pain in my back. So here it is, folks: 1.) I’m hypermobile 2.) pregnancy actually causes hypermobility, so it exacerbated the resident problem and started the chain of events that lead to the back pain, and didn’t stop since I’m naturally hypermobile 3.) I have scholiosis, which is drawing my spine/hips out of balance, and the hypermobility actually allows this drawing to be even easier 4.) I have abdominal scarring from repeated laparoscopes (which were performed partially to correct my endometriosis to try to have children, and partly in an attempt to discover what was causing some of my earlier chronic pain). The scarring is also drawing my pelvis out of balance, and the HM makes this job easier, too. All in all, the base of my spine, my hips, and my pelvis are all scrunched up and my back muscles just can’t take it. They’re clenching up in the attempt to compensate for the HMS and scholiosis. So, I’m doing the exercises and going to attend therapy.
In the meantime, I think I’ll research EDS and, at the risk of seeming a hypochondriac to yet ANOTHER doctor, I believe I’ll bring it up with my GP at our next visit. After all, she believed me enough to send me to a therapist… or did she only send me to get e out of her office? After all these years, I’m afraid I’ve become a bit suspicious and paranoid of what is really going on in a doctor’s mind when he/she sees me sitting on his/her table. I know it is very, very long. But, I am so happy to find an answer, I had to tell SOMEONE
marjibaldwin@hotmail.com
Emily (Submitted 17/9/2006) Hi im Emily and Im 15 years old and I think I have fibromyalgia. My mum actually told me to do this to get my feelings out in the open and to talk to people who are going through what I am. I live in Lanzarote but am adopted from Sri Lanka. As long as I can remember i have always been in pain. Whenever i moved i would flinch because my muscles seemed to be tied in knots. I thought this was normal. I thought everybody felt pain getting dressed or brushing their teeth but they were tough and coped so i put it out of my mind. In February last year after suffering in silence and becoming extremely depressed i developed pneumonia. I didn't realise I had it for three weeks and carried on going to school as normal. It was only when i couldn't breathe properly or muster up the energy to hold my head up that i told my mum. She rushed my to hospital where i stayed for a long while pumping me full of antibiotics. Both the doctors and my mother were angry I hadn't let them know i was ill but after all this time any pain, i feel,just gets pushed to the back of my mind and ignored. One of the doctors noticed i have very over developed shoulder and neck muscles. They had always been like that, my mum says i looked like a body builder (thanks mum). The doctor was concerned and sent me to have a biopsy in Tenerife. It was the most terrible experience of my life.The doctors treated it like a joke. When they had to extract the muscle tissue they didn't numb the skin at all. I felt every cut as i lie there biting my lip to keep from screaming. When they had finished i felt woozy and nauseous.The results the obtained from that were i had myasthenia gravis but my doctor ordered a second opinion. We went to Germany to see one of the top muscle specialists in the world. He thought it was lipid storage myopathy and did another biopsy to make sure. Those results were negative. Then we went to Newcastle to see more specialists and have another biopsy but they are also unable to give us results. The doctor who started this had been very supportive and she was the one who said it could be fibromyalgia and we should treat it as such. Sine looking it up in many books and on the internet and reading people stories it does sound very possible this is what i may have. I wake up exhausted in the morning and i stay that way all day i cant concentrate at school and my memory is bad. I am so tired all the time and the pain is constant. At school i used to get teased by my friends and they say im looking for attention or that im lazy. I used to go to school once or twice a week because i would spend the next few days recovering. Its exhausting to have people not believe you and i have had people come up to me and tell me to get over it or that its all in my head. I would never be making this up. The strain its put on my parents, who recently decided they had to get divorced, and the rest of my family is terrible. I feel very guilty at times and i hate myself. I get angry at my mum even though she had done nothing wrong. Im so frustrated at times and im so angry at myself for not having the strength to do the things other people my age are. I don't go to school any more because there is no point and im afraid i may never catch up. Im glad i have written to you as you have helped me get my feelings out there and now i know others have been trough the same i feel more hopeful. Thankyou. Love and good luck to all Emily xxx bow_4eva@hotmail.com
Jaime Johnesee (Submitted 19/7/2006) Since I was seven years old I can remember wanting to be a zookeeper. When I was 14 I began on my zookeeping career path and had been a zookeeper for 14 years when last July this horrific pain began in my right arm. I had finally gotten the job of my dreams. After being extremely overworked at a zoo down south, I recieved an offer to come back home to Michigan and work at one of the best zoo's in the country (the best in my opinion). My bosses and coworkers were amazing, they valued me as an employee and peer. I was recieving the verbal pats on the back everyone longs to hear at work, and my ideas to better my department were actually being taken seriously and put into action. I was given a very early promotion and was the happiest I ever remember being. I had also met my now husband back on March of 2005. My life was going so great. I was used to feeling constant pain, I figured it was normal given my career. I was also used to being exhausted all the time, again attributing it to my choice of occupation. I had no clue that it wasn't normal to only have a bowel movement once every two weeks ( I have had what I now know as IBS since I can remember). Like most FM stories I have heard I went to different doctors for different symptoms. Finally I found a doctor who ran every single test known to man, right down to a DNA work up to see if I might have a genetic disorder. I was lucky enough to have found a doctor who was not only through (she immediately wanted to rule out Lyme disease, given my career) but she is also treating other FM patients as well. Taking a very through history and giving me what I like to call the push test, she diagnosed me last July. I probably should have taken her advice then and tried to cut back work hours, but we were union and that was impossible. In late August, early September the exhaustion won and my body basically shut down. My husband (now) had to carry me to the bathroom, and bathe me and even brush my teeth and hair for me. I took FLMA (The family medical leave act) and for the three months I was off had almost no improvement. I was devastated when my doctor told me I probably would not be able to be a zookeeper any time soon. I believe she used the term possibly even years, if ever. So there I was unemployed, depressed and feeling so useless and helpless. I had always been so independent, you have to be being a zookeeper, you have to go where the jobs are. (I have lived in Mobile, Alabama; Indianapolis, Indiana; Birmingham, Alabama and Michigan.) It has been hardest on me emotionally and mentally because I lost my identity when I lost my career. I still don't know exactly what to do with my life (I have been writing children's books about animals) and I still feel depressed but with all the information out there and my doctor's and husband's help I now feel like I might be okay. The pain isn't as bad as it once was and now I have at least 3 days a week where I can move, type and feel mostly normal. So I guess I am on the road to homeostasis (zookeeping term for leveling out and returning to normal). I want to thank everyone who does share their stories and the folks who give them a place to do so, because without all of that I would never have been able to recover mentally. So thank you all so very much and I wish that one day this disease will be banished. Until that day, be well and be strong. Mrs. Jaime Johnesee zookeeper829@aol.com
Heather Margozewitz (submitted 16/7/2006) Hello - My name is Heather Margozewitz. I am 38 years old, a mother of 2 (8months, and 4 years) I was diagnosed with fibromyalgia/CFS 9 years ago. I used to teach full time 4th grade. I am able to work though I have only been doing that part time. Fortunately my school District allows for shared contracts. It boils down to 93days a year. I joined your group in order to hear others stories and hopefully be a support to them as well. My story is not unique- I read what others have written, and though my heart goes out to them, it is reaffirming to me to know that I'm NOT Crazy. When I was diagnosed I was given pain killers and was basically told-that's all we can do. I did not want to except that-So I got every book on the subject and began to research. I went to specialist after specialist. My life revolved around Dr. appointments. I tried:Meds (darvocet, vicodin, ultracet, flexeril, elavil, nortryptaline, lorazapan, ambien, to name only some of them) Obviously, sleep was an absolutely huge issue. It would hurt to lay in one position, I would move rooms, walk the house, or neighborhood, and if I'm to be completely honest, I would lay on the bathroom floor and cry hysterically. I would tell people that if I could draw some of what I felt, I would draw a little creature with sharp teeth eating just under my skin. It would hurt to have a brush touch my scalp. Again, if I'm to be honest I was terrified, and depresed every day. I wondered what would happen to me when I was old. I truly thought my children and husband would be better off w/o me .( I get a little teary eyed here). I wouldn't take my own life, but at times found my self praying for an accident. I wanted to share that I also tried: physical therapy, massage, accupuncture, every nutrient and herbal therapy anyone suggested would work, all to no avail. I even tried tohe guifenasen theory . Guifanesen is an expectorant and there is a book that says if taken in large doses would cure Fibro. Well that is part one of my story. The second part begins with a friend (again teary eyed here) who told my husband and I about a company that she was with. I should say this friend has lupus and is the most energetic, upbeat, person, I know, and is in terrific shape. Anyway, she wanted us to hear about something she thought would help my Fibro. To be honest we thought she was a LUNATIC. We wouldn't listen. We would even joke,"Poor gulliable Lise, what has she gotten suckered into?" Finally,she came back from a conference,called me up, and said, "Heather, let me ask you, Do you want to get well?" I ROLLED MY EYES, and said, "yes, I want to get well." I did not say it with any kind of conviction though. I was really irritated, and thought, "Who does she think she is?" However, I agreed to listen to her, not because I thought anything would help, but because I believed her , or that there was anything that would help. Rather, I believed her heart. She wanted to help. My husband and I went to her home to hear someone talk about this Japenese toal wellness company. I walked in with such a wall up. I'm told now that I had my arms crossed and glared at the lady doing the talk for us (I now love her-she is such a support to me) We learned about Nikken. Which is a Japenese research and development company that has been around for 30 years, and is 38 countries. They are the ONLY Total wellness company on the market. Their foundation is the five pillars of health. Healthy Body, Healthy MInd, HealthyFamily, Healthy Society, and Healthy Finances. They believe that if you get your body into balance then it has the power to heal itself. This is accomplished through proper, Air, Water, SLEEP, Nutrition, and Physical Activity. All of which Nikken has patten-ed technologies for. Well, we listened and were intrigued, but not convinced. My friend then had a man from British Colombia who works with both Canadian and U.s. Health officials. He is a consultant and does not take a dime from Nikken, because he does not want people to question his motivation in reccommending them. He actually set out to disprove them, and when he could not he became an advocate for them. After him, I met a 66 year old woman so full of energy who told us that she had debilitating Rheumatoid arthritis. She was told her hands would curl, and within a year she would be in a home. She is now living pain free and her hands are not curled in the least. Another girl I know had Juvenile R.A. diagnosed at 10 , wheelchair at 13, now no longer in a wheel chair. MY husband and I decided that we had to take the chance. We had no choice!!!! I have been living in a wellness home since February. My story now has a new chapter- I have been 100percent medication free since March (uh oh here come the tears again) I sleep through the night(every night) My energy is ten fold, my pain has dramatically improved, and gets better every day. MY husband says that he feels he has his wife back. My children have their mother. I have so much to offer my friends and family because I don't wake up every day thinking,"how amI going to survive today." Most of all I have HOPE and JOY back in my life. This would be my hope for everyone else out there that is suffering as well. I am so eternally grateful to the people who started me on my journey to total wellness that I can not put it into words. It is important for me to make sure that people understand that these are wellness products/technologies. They are good for everyone whether you are looking for prevention or have an illness. They do not claim to cure anything, but rather,aid the body in healing itself. I can tell you countless peope have experienced dramatic results. By the way- I don't even get allegy shots or take allergy meds anymore. If there is anyone who is interested in learning more about how to help your body heal itself I am 100percent committed to helping you get the information you need. I encourage you to not neccessairly believe me , but rather, are you open to getting more information. The science is behind these technologies, there are western medical professionals that are getting on board etc... I am so new to this that I can connect you to people who do have the expertise. I know that many of you are in different countries. (I am in U.S.) Please do not let that deter you Nikken is in 38 countries and expanding all of the time. I am still more than happy to help in any way that I can no matter where you are. I am going to get international calling on my phone. Please do not hesitate to contact me if you are interested in receiving more information. Thank you for allowing me to share my story with you Wishing you the best of health, Heather Margozewitz hlmargoze@yahoo.com 916-632-8864
Shiela (Submitted 7/6/2006) When I was 19 and in my first year of college I developed severe muscle spasms, bouts of vertigo and endocrine problems. My doctor first suspected a calcium deficiency. Wrong! Next he diagnosed me with hypoglycemia, but the suggested eat 5 small meals a day, high protein low carb diet did not solve the problem. Next I developed red butterfly rashes, severe joint and muscle pain, difficulty thinking, deep fatigue and facial charlie horses. A round of doctors gave up on diagnosing me so I tried to make the best of it. I eventually married and had three live births. Each pregnancy was so difficult, 24/7, I don't know how I lived through them. From day one of the pregnancy until I delivered I had severe vascular headaches which made me feel like I had brain tumors. The nausea and vomiting were beyond description and human endurance. Then I had two pregnancies, still horrific to deal with, but at 4 and one half months along each time I suddenly began hemhorraging and lost the babies. That is when my G.P. started thinking I had a systemic problem. I developed more and more butterfly rashes, joint and kidney pain, heart palpitations, Raynaud's phenomena, numbness, sciatica, and at times I would collapse to the floor unable to get up. One day my G.P. was so frightened when I showed up with a bright red rash on my face, and so stiff I could hardly move, that he ran down the hall to get another physician to come look at me. He said, "Have you ever heard of lupus?" I said no and asked what it was, to which he answered, "Go home and don't worry. You worry too much." The tests came back negative, and I went through a horrible year or so trying to convince him and my then husband that there really was something wrong with me. After a series of consults with specialists, I was given the following diagnoses: Raynaud's phenomena, fibromyalgia, non-sereal rheumatoid arthritis, then ANA-negative lupus (two skin biopsies for lupus were positive), Sjogren's syndrome, and then I was told I had a multiple sclerosis overlap with my lupus. At age 45, while I was serving as a reporter and attending a city council meeting, my head and neck were suddenly forced to the far right against my control, and my heart raced so wildly I thought I'd have a heart attack. I was diagnosed with spasmodic torticollis (dystonia), and acupuncture helped significantly. (I had been told brain surgery would be the only way to fix it.) Then at age 49 in preparation for surgery, a hematologist at U.C.I. Medical School in California diagnosed Ehlers-Danlos Syndrome #4. He said, "You are really going to hate this one." He warned me about being careful of joint dislocations and bleeding episodes. He and his staff had quizzed me prior to diagnosing me about my joint flexibility as a child and love of aerobic gymnastics and modern dance as a teen, and about my father. My father had been extremely hypermobile, and I remember him wrapping his ankles and legs behind his neck and balancing on chairs that way, or curling his ankles up above his thighs and walking on his knees. When he was 35 he developed severe diverticulitis and his bowel nearly ruptured. At 42 he had to have a colostomy. He also had unusual heart problems and at age 61 had a huge clot hit the medulla and he died a week later. At 49 I was also diagnosed with von Willebrand's subset disorder (another bleeding problem). Between the EDS #4 and von Willebrand's I must have DDAVP infused before a surgical event or extraction. At 51 I was diagnosed with a double heart block, neurological in nature, not physical. Then I began to have watery diarrhea, black tarry stools, abdominal pain, watery wheezing, tachycardia and bright red flushing. Doctors suspect carcinoid tumors (slow growing neuroendocrine tumors), and I was attemtping to be diagnosed for those last fall when I suddenly had a very unusual stroke. I felt light headed and distant, and my hearing and visual acuity seemed diminished. I was weak and tremulous and decided to go to bed to sleep it off. Two hours later I awoke to the sensation that my bed was twirling through space a thousand miles an hour and I was being thrown forward against my will in sommersaults at the same time. I tried to make my way to the restroom, and my body was flung against its will into the walls and the doors and the countertop. I prayed for help, and I lived. It took me an hour to crawl to the phone and call 911. At the ER I told the doctor I thought I was having a stroke as I was having identical symptoms as those my father suffered and many of his aunts and uncles who also had cerebellar or medullar strokes. The doctor did not believe me. Even though I vomited projectile for nine hours straight, my head hung to the left and my head and neck shook, and I told the doctor I had suddenly lost all hearing in the left ear, he said that I was obviously not sick and was being discharged. I said, "Do I really look OK?" and he answered, "Well how do I know what you normally look like?" I said, "My hearing is gone, I can't stop vomiting, my head is spinning, I can't walk, my head is shaking, and I can't feel anything on the left side of my face. Does this really appear normal to you?" He then said there was nothing wrong and he was calling a taxi, and he was sending me home barefoot and in my vomit-covered nightgown. I protested, so he sent in a nurse who tried to convince me nothing was wrong. Next, they sent in the ER administrator who also tried to convince me that nothing was wrong. The administrator called a friend, who took two hours to get there. When she did arrive I was told to leave with her, and so I asked to use the restroom. I walked into walls, fell over on the toilet, etc. A different nurse who saw me said I scared her to death just watching me. She called for a different doctor to examine me who then admitted me. It was still hell, as the original ER doctor was assigned to me and he did nothing but debate with me, saying that the chances of my having more than one connective tissue disease and M.S. was about a billion to one. From there I was sent to a nursing home with no diagnosis or protocol. At the nursing home someone called an ENT specialist, and I was transported by ambulance to him. Fortunately, he had studied a lot about connective tissue diseases and autoimmune diseases. He diagnosed a cochlear stroke and explained that the artery feeding the cochlea is the smallest in the body, and so a tiny blood clot can make its way through the body and then lodge there. After five minutes without sufficient oxygen to the cochlea, the hearing cells die and then the balance cells. After that he referred me to an Oto-Neurologist, who has done a number of tests. He has now determined the stroke began as a minute brain stem bleed, and a clot the size of a pin head moved to the area of the cochlea and lodged. He said recent tests show cerebellar lesions, cerebellar ataxia, vestibular disturbances, peripheral nervous system lesions, and we are looking to determine their etiology. I didn't think too much before about the Ehlers-Danlos contributing to all this until two weeks ago when I finally met someone else with Ehlers-Danlos vascular type. I looked up EDS with cerebellar lesions or cerebellar ataxia on the Internet, and there were sites that came up linking Chiari Syndrome with some EDS patients. So the cerebellar lesions and the ataxia could be part of the EDS panorama of expressions. Now comments like the one my physical therapist made about my neck being so hypermobile, "and that's not normal," make sense. Then I was told there is a study being done in Maryland, headed by Dr. Nazli McDonnell, regarding EDS patients and overlap connective tissue diseases. She told me that there is more propensity for lupus or rheumatoid arthritis or MS to occur in people with EDS. So now I will be a volunteer for the study. Despite all my medical problems I have achieved much. I started the Lupus Foundation for the state of Utah in 1982. I won a special award from the governor for memorable volunteerism. I became a reporter and won nine writing awards, and interviewed presidents and movie stars. Each day I try to live my life to the fullest despite my pain and disabilities, and would recommend that to anyone just being diagnosed with any of these disorders. Acupuncture, massage, herbs, vitamins, biofeedback, meditation and prayer have all been very helpful to me. Unfortunately, I have never had the support of family, and worse, my ex-husband has had a field day turning family members and employers, neighbors, etc., against me, meanwhile making me out to be a hypochondriac. I moved three states away from him and my family. I now have a wonderful group of friends and loving healers and church members. Several wonderful "alternative healers" have been brought into my life, enriching it so much. So I am blessed through it all. Shiela skytoucher@sbcglobal.net
SAM FIRTH (Submitted 24th March 2006) hi my name is sam firth, at 16/17 i was daignoised with having rare chromosone condition its called a Balanced Translocation Of the X and 4 Chromosones which means i have my X and 4 chromosone mixed up and made me start puberty late which means i have an under developed body which means i look about 12 years old even tho iam 19!!!! i was recently diagnoised with having joint hyper mobility as well as having an under active thyroid! iam always tierd and hurting 24/7 365 days a year i hate the way i feel i would love to mess around with my mates and go out every weekend and run around with my neice and nephew but unfortunally i cant, i am also going under hrt for my rare chromo disorder as well as coming to terms with the possibility of being unable to have kids and being not 'Normal'! life is very hard for me at the moment i hope it gets better soon my mum is also disabled and i have to help her and she helps me which iam very thankful for not many people have support like that well that my story if any one would likle to talk please get in touch at jade1935@yahoo.co.uk best wishes for the future sam xxxx
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AICHA TURNER (submitted 14th November 2005)
16 going on to 80!!!!!!!
I am 22 and this is how it happened:
When i was 16 i had a bad car accident which left me with post traumatic stress disorder which was really bad i wanted to give up almost eveyday of my life!
From that moment on I was never the same again after a week I began to feel
drained from energy and developed a bad sleeping disorder which left me
sleeping by day and waking by night!
I couldnt go to school with an alarm clock I needed my mum to dress me in the mornings and i would cry every morning because of how tired i was. I got left behind big time with school work, which at this time i never
realy cared! My family began to notice stuff about me like when I was at home I would
always be laying down and wouldn't breath normally if i was sitting up. My legs felt like they were pulling weights! I was spending more and more time in bed I became worse as i wasn't geting any exercise and I then got breathless after taking just three steps and my heart would hurt so much. So I gave up college after a few months! I gave up many dreams and goals that I wanted to reach. Day by day i watched my body loose control. I couldn't sleep or rest most nights as my muscles would burn and ache all
over. It was hard to explain to anyone that i was in pain 24/7! My fault I guess as no matter how hard times got I always had a smile waiting for someone. When I quit college I spent my years in bed and that made me forget to spell many words which can be embarasing at times. I lost contact with the outside world and stopped going out all together and it got so bad for a few years all I did was go out once for every six to
eight months. When I do go out I panic and want to hide as I developed a phobia!
I hate been labled "lazy" and people these days are so quick to judge. When i turned 21(last year) i thought things couldn't go any worse but they just did i developed a lung disesase and found it hard to go to hospital and I havent been in months because i always suffered in silence i developed "manic depression" which is all about mood swings one minute i am so happy and the next without warning I am angry. Things have got so bad i cant walk anymore. I cant plan my day or stick to a routine or do anything i just sit there burning. Even my jaw
started to hurt which is common in some cases. Most people who suffer this problem have a sleeping disorder and I learnt
that most of us dont sleep well calling it "unrefreshed sleep" thats why
we are always so tired. This problem feels like been disabled.
HANNAH (submitted 27th May 2004)
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My name is Hannah Butterworth. I live in England. I am 24. I have M.E. and have lived with this illness on and off for the past 13 years. I have experienced this illness as a child, as a teenager and now as an adult. .About four years ago I was admitted to the specialist unit at Oldchurch Hospital, Romford under the care of Professor Findley. There I met five other people with the same condition but with different degrees of severity. This experience I truly believe has been life changing.
When I first became ill I wasn't sure what was wrong with me, I was having blood test after blood test and they all came back negative for everything that I was tested for.
Some days it got to the point where I was wondering if there was actually anything physically wrong with me. Then one day I saw my GP and he said that he thought I could be suffering with something called ME, I thought great at last I have a name for this and I can start to recover. Little did I know that this was only the start of a very long journey for me.
Since I have been ill I've constantly worried that my life is standing still while my age is still growing. I've always been a deeply ambious person so this illness has hit me hard because there is a part of me that is concerned that I will never make anything of my life, I won't ever achieve anything that I concider to be "worthwhile" and with each year that passes a sucessful career seems ever more distant and unlikely.
I worked a lot with my counsellor because I've found being ill extremely difficult over the years, and that is hard for me to admit, as there is such a stigma attached to having to seek this type of professional help. I thought it was just oversensitive weak people that went to therapy but I was wrong! One of the things that I find difficult is the fact that I will constantly compare my life to that of my friends. What they have achieved, but I haven't. Places they've visited, but I can’t. Goals that they've reached, but I can only dream of and so on. I never talk about being ill with anybody so when I first started having counselling it was a new experience for me. From talking to no-body I was suddenly expected to speak of nothing else and that was painful for me. I was told that I was wasting energy suppressing my emotions and that energy was badly needed elsewhere, I don't know if I believe this but I am prepared to accept that this may be the case. When I was first offered counselling I didn't want to know I refused to see her. I thought yes I have emotional issues, but they are mine and I just can't and I won't talk about this. My OT spoke to me the next day in a harsh but fair manner and I gave in. This was and is the scariest decision that I have ever made.
My counsellor was lovely and I immediately liked her, but liking her made me feel nervous because I didn't feel this was a safe relationship. I think that what counsellor or therapist's offer is a synthetic "friendship". The bottom line is no matter what happens they will only ever see you as a client, not an equal and not a friend. I stayed with my counsellor on and off for about three years and more recently once a month for about a year. Over this time we talked about many things and in the end she probably understood me better than I do myself or at least would ever admit to. I saw her for the last time at the beginning of January and even now not many days’ go past when I don't wonder what she is doing or where she is. I have a tremendous amount of respect for her and she is someone who I will never forget. As a person she was immense and she has been a inspirational figure in my life.
I am three months on now from when she left and some days I still miss her but I realize that I need to move on with my life and sail on to calmer waters. I see a Psychotherapist once a week, we are changing my programme a little and I hope to be able to push on and start getting my life back. I still feel the stigma attached to being in therapy and few friends outside my inner circle know that I receive this kind of help. However if this is the difference between me getting better or not, then I'd be an idiot not to take this opportunity and see where it gets me. I already have enough regret in my life without looking back and thinking if only I'd...........because ultimately this sort of thinking can and will destroy you.
When I think of the future I feel afraid, my biggest fear is to get better and discover that everything that I’ve dreamed of through these difficult illness years has been exactly that, a dream. I hope everyday that the illness hasn’t robbed me of the life I was meant to have, but somehow never got. The bottom line though is this, I don’t know what the future holds for me, I have no magic crystal ball, but I’ve got one shot at this life and if I give in to my negative thinking then I’m beaten already, and the future that I see on a black day will become my reality. So I'm going to take a deep breath, dig deep, and I'm going to fight for my future and what I deserve, I will not rest until my mission is over, and my goals have been reached. So watch this space.
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SUSAN (submitted 22nd May 2004)
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I'm not sure where to start with this as I find it hard to think back to how hard things were before I was diagnosed with Fibromyalgia. I'm 23 and have been married for two years to my wonderfully supportive husband Kenny and have been blessed with two boys Scott 4 and Andrew 1. Not long after I had Andrew I was diagnosed with Fibro. I was in agony from before I had him with a hip displacement. So when we came home it didn't feel like I had come home with a new baby. All I could think was why can't I just take them out for a walk, give them their bath's like any normal mother should, why can't I run over and comfort Scott when he fell over. Then months passed and as the boys got bigger and Andrew started crawling I finally had a way of playing with him, but really all I was doing was calling him to crawl over to me. I'll admit that there was a bond between us as the best thing I could do was give him his bottles and cuddle him for as long as I could. I know I seem to be going on about my kids but since getting Fibro I have changed from someone who was working as a bar supervisor and running around playing with Scott, always somewhere doing something to being bedridden for months then doing the one great thing women can do and having a baby. Then coming home and it's as if your whole world comes crashing down and from out of nowhere something is stopping me from doing the things that had come naturally, to look after the people I love. When I was diagnosed I was so happy to know that It wasn't in my mind, I actually had something wrong with me and for weeks I was delighted about it. Even my doctor found me funny as I was so happy to be able to I do have something wrong with me, that was until the Rheumatoligst told me that there was no cure, no magic tablets that got rid of it. then my happiness had a grey cloud hanging over it. I thought yes I'm going to get everything back to normal. I have a great husband and family who are really supportive and helpful. But it took everyone a while to understand what was wrong with me, how it affected me, how I had changed into this person who was needing a lot of help and support to get used the thought that I would never be the active person I'd been before. Naturally it was my mother who knew this was hard for me, she understood how it was going to affect me and she was the one who explained to my family what it was, my husband was telling people for months I had arthritis ( which made me laugh). My mother is the one person who really helps me even though she is ill herself, she still comes and helps me with the kids, helps me to have a shower or washes my hair, takes me out to shops, knows only by hearing my voice on the phone that I'm feeling down. But what would you expect she's my mother and if I didn't have the help and support that I get from her and all my other family I would be totally helpless. I also have to say my husband is great again as he is a chef and before my fibro I did the cooking but now when he comes home he doesn't go and sit down, he finds something to do that will make life that little bit easier for us as Fibromyalgia doesn't just affect you it affects everyone around you and that is why my family are so much more important than before. Also I need to say that my father now is a hands on grandfather and not just a Papa who comes around every now and again but a grandfather who has my boys running to him the minute he comes in the door to give them their baths because when Kenny is working it's them I need to do one of the things I can't. Hopefully one day we will find a way of stopping Fibro from taking over our lives and we can all return to our normal self's. I just wanted to let others who have no children that I somehow manage to keep my spirits high and have never had depression with it "touch wood I wont" and I don't know why but even when the pain is so bad to the point I'm near crying then one of the kids come along and get me to do something , It's as if Scott knows that I'm sad and cheers me up. One thing I forgot to put in my story and it's really left me feeling bad for forgeting it is about Scott. He has been so understanding about my Fibro. In the begining he found it very hard to understand why I wasn't able to do the things we allways did, but he turned into the best son any woman would dream for.For the last couple of months he has helped me get out of bed when I was too sore to do it on my own, he picks things up for me, helps me with shoes but most of all he is really good at playing with Andrew. He does have his moments like any boy does but I don't want to make it sound like I'm making him do too much at home but he loves it as when he helps me he gets a new toy car. He goes to playgroup then comes home and either they watch a video or they play outside. But most of all he dosn't care about going out with me and my stick. I haven't said much about Kenny but words can not decribe how much he helps me and how much our lives have changed and what he has had to cope with for the last 18 months but everyday he finds a way of coping with this horrible thing.
ANGELA (submitted 21st May 2004)
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How Fibromyalgia has changed my life.
March 26th 2004 I was diagnosed with FMS. FMS is “Fibromyalgia” I paid a lot of money to see a specialist he was honest and he talked for over an hour with me, it was great to be treated with respect. I have seen many doctors they did not give me the time of day. This specialist checked all the 18 points and explained to me what they mean he let me ask questions and listened to me. He told me ways to help myself and also told me about this FMS support group. I feel relieved now that I know I am not crazy. I have had pain, for years; going on 20 years. I just ignored it; I thought I was going insane. I hurt all the time and the pain would move from place to place on my body. I thought what the heck is going on, I cried all the time it was depressing. I would wake up in the middle of the night shaking and freaking out in my head thinking this is not real. Now that I have a name for this condition I am relived to know I am not insane.FMS affects your whole body it feels like having the flu that never goes away. I don’t sleep well at all I am up every 2 hours, some nights I can’t get to sleep and I just stay up until I pass out. I am not getting the rest I need. Some times I take over the counter meds to sleep. I have been using food like a drug and I just accepted myself fat. As time went on the pain I was experiencing became worse I got sick and tired of it and since I don’t have insurance I cannot get any medication. I searched all over the net about FMS and healthy diets.
I found lots of information and started to change my eating habits. I have lost over 50 pounds I feel much more positive about myself. My self-esteem is better. My muscles still hurt, the weight loss has not helped the pain of FMS, but the weight loss makes it easier because I can stand longer on my feet. I could not stand while cooking in the kitchen for long periods of time. What helps me is using a bar stool to sit on while washing dishes or chopping vegetables. When making a big meal I have to do it little by little. Since November 2003 I have used a cane to walk. In April of 2004 I received a wheel chair from a church that donates them to people who need them. I have not been able to work since November of 2003 I do not go out side very often. I have been staying home most of the time because of pain from FMS and depression. I use a cane to help me get around in the house and the wheel chair. I never know when my legs will give out and drop me to the floor. I hardly sleep and do not take any sleeping aids.It has not been easy for me to accept this I use to be in shape and could do so much more but now I feel like I am 80 years old in a 39-year-old body. It is not fair! I am learning from the FMS support group that I go to. That life is not always fair but this is the way it is. I have to accept it and go on with life make the best of it. We are not here forever I may as well enjoy the life I have and be positive. My ego and pride has been getting in my way. I have cried a lot and I have been isolating a lot. I think a lot of the problem for me is acceptance. I have to accept what I have then I have to take action to help myself. Since I started going to the FMS support group I felt better I have only been to one meeting but I got to see how people can have a life and be happy and make the best out of their lives. I found out lots of information about how I can improve my life I am looking forward to going next month. I am learning to accept much better. I have to accept that I have FMS, and make the best of it. More than ever I have to have a complete unfailing trust in God. I am reminded of what the actor Jerry Lewis says at the end of the MD telethon “ You will never walk alone.” My attitude is changing I am excited since the first meeting at the FMS support group I got the courage to accept a scooter for myself to get around in. Especially since we do not have a car. My legs just don’t go as far as they used to. I was fortunate to get a scooter on an installment pay plan because I do not have the insurance to qualify for one. This is a blessing, I can go out to the store go on the bus. I can go out and live life. I have some goals I would like to pursue in my life. There are times I feel this pain I have physically is a punishment for me being the drunk I was. Then I have to remember I don't believe that God punish and I believe life is an experience for us to experience to get closer to our HP to experience the all that God is. I am finding out that there are certain actions I can take to better myself to live a longer, healthier, happier life. I have found out that swimming is easier than walking or stretching. Now that the weather is getting warmer I will be able to swim. There is help for people with FMS we just have to look and ask questions. I am becoming ok with myself, and learning to stop when I need to. I give myself permission to be human. I think acceptance is the key, not that we accept and sit around all day and do nothing but I feel I have to accept what I have and then do the foot work to make a life for myself. I am learning my limitations and rest when I need to, not go over board and do every thing at once. One thing that really helps me to accept what is going on in my life, and living with FMS is prayer and meditation. I have a lot of conversations with God; my way of praying is talking to God; like I talk to people. Then I have to listen for the answers. Be still to hear answers, I breathe in and out to get through the pain when I am in a flair up with FMS. Another tool I use is writing, writing helps me to accept, and deal with my emotions; writing is a tool I use often. I am seeing more and more that I am not alone. God is always with me. I am finding it is good to share with others who are going through similar experiences. I like the idea of a support group for FMS because we can encourage each other. I have received positive information from this support group what a blessing we have. I think since we look good on the out side and we feel like were dying in the inside people just do not understand our pain. People who have not experienced FMS do not know how it is to live in our shoes. The pain we have is real people have to believe what we say.
We have feelings we are human, I believe having FMS can be a blessing don’t get me wrong I would not wish this on anyone, but because of the pain, and the depression, I have been in I have gotten desperate to really enjoy life. Now I see what living in the moment really means. Since I have been sober and been going to 12step meetings I have been told to stay in the moment but not until having FMS have I really understood what staying in the moment really means. From day to day I do not know what to expect some days I can walk, some days I can’t. I am not taking life for granted any more like I used to. I am starting to see more what life is really about. Life is a gift. I believe those of us with FMS can have a wonderful life. We have to learn our limitations, learn what we can do, and cannot do, learn to ask for help when we need it. Give ourselves permission to not be perfect. Rest and relieve our stresses of daily living. I have a choice I can feel sorry for myself and try to hide from the world as I have done since I was diagnosed with FMS, or I can go on and make a life for myself, and even a better life then the one I had before FMS. Life is what we make it. I can enjoy or destroy it. It is my reactions to the experience of life.
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TERRIE (Submitted 22nd October 2005)
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I had been suffering with extremely bad pain in my back after the birth of my first daughter in 1999. I told my Ob/gyn that it hurt so bad just to bend over and pick up my baby.they figured it was just a strain on my back from giving birth, So they put me on pain medication and eventually the pain in my back seemed to get better but then I stated having alot of pain in my legs and feet. I ignored it for awhile and would pop a tylenol and tried to go on as if nothing was wrong. In 2001 I had taken on a new job which turned out to be a nightmare for me. My Manager was a very difficult person to work for. I became very stressed out, and wasn't sleeping well. I would wake up every morning with my whole body feeling like a toothache. After living like this for two months hopeing that the pain would just go away, I finally went to my Doctor and expalined what was going on. They did a blood test and at first they told me that I had an auto immune problem and was told to quit my job. I endeed up quitting a bout a month later and time went on and I still wasn't doing any better, so in 2002 I went and saw another Doctor who said that he wanted me to go see a specialist. I went ot the appointment wondering what I would be told this time. They did some testa and I was told I had HMS. I was like what the heck is that? They explained it to me that I was born with it and most likely due to my being so numb from my epiderial with my first baby and over extending the muscles in my body this is what most likley caused the painful symptoms to finally come to the surface. I was sent to physical therepy and learned alot of muscle strenghtening excercises which did help. I ended up having another baby but this time around knowing I had HMS it went alot better as I knew to be careful about how far I could stretch while givnig birth. I am glad to report that this time around I was able to pick up my baby pain free! What a difference. I still have days where I will get to hurting prety bad , it usually if it is damp weather outside. I also suffer from the migraine headaches which I found alot of HMS paitents have. those of you out there that get those too I feel for you as they are not any fun. But I have a medication for them and it has helped out with pain management in that area. Thanks for letting me share my story. This is a wonderful website. It is nice to know I am not alone.
A BIG THANKYOU TO EVERYONE WHO CONTRIBUTED THEIR STORIES & EXPERIENCES FOR OTHERS TO READ!
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FIBROMYALGIA, HYPERMOBILITY SYNDROME & CHRONIC FATIGUE SYNDROME / M.E
