Linda was one of the first people in the US to receive social security disability with the diagnosis of Fibromyalgia and received it in 2001 after 4 years of trying.
I publish her interview on today, on her birthday and wish her a VERY HAPPY BIRTHDAY and lots of joys.
Age: 63 (Born October 2, 1950)
Location: Dallas County, Texas, US
Occupation: I own my own pet-sitting service but I am basically considered retired from my career
Kind of occupation: Private Contractor
Year when symptoms started: 1985
Diagnosed in: 1989
Occupation: At the time I was diagnosed, I was a veterinary technician working full time as a ranch manager for a large commercial show arena, boarding facility, and breeding operation in Kaufman, TX named Mystic Acres Arabians (farm name because she bred Arabian horses) the arena was Mystic Acres Arena I worked from 1989-1998 when it became too hard for me to function and drag around 50# sack of feed and 1,000# animals, clean 20 stalls daily, exercise the horses, breeding operations, training duties, showing, and other duties of running a working ranch.
Marital Status: Widow (Was married at time I was diagnosed)
What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?I was one of the lucky ones. I had been having pain for a couple of years and my regular M.D. (Family Physican) had prescribed meds for inflammation. They helped a little, then I went to occasional use of opiods for the bad days, plus something to help me sleep. I read an article on Fibromyalgia that was published in Women's Day and I tore it out and took it to my doctor. He read it without any expression at all, and then I was sent to a neurologist who thought ot of the box, Dr. Louis Dyll in Mesquite Tx. He believed in Fibromyalgia and went to whatever lengths he could to treat me. He put me on Prozac, Celebrex, Ambien, and Vicodin and Soma. It worked good for a while but then the sleeplessness started and the pain increased.
How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?
My worst symptoms are the sleeplessness and the pain. I also have numbness and burning in my feet. Numbness in my hands, to where I sometimes drop things that I am sure I have hold of. I sleep maybe 4 - 6 hours, waking up off an on through that much. If I get 4 hrs solid, I am very lucky. I often nap as I need sleep so badly and so I try to get rest whenever I can. But usually something wakes me during the day, as I have a roommate and because of my petsitting business, I can't turn my phone off. It is hard to nap very long but I try to when I can as it helps with the fatigue. Recently, for several weeks, I had fatigue so bad that when I drove, I had to roll down the window and sometimes even hit myself in the face on the cheeks to keep awake and alert. Then, it was gone as fast as it started. Nothing was different in the beginning or the end; just fatigue during the daytime. I guess that was the strangest symptom I have ever experienced.
I take opioids for pain but the doctors won't give me enough to really do much good. Because of the pain, I do not have a good quality of life. I became bedfast at one point and a set of doctors from Parkland, after diagnosing other illnesses, put me under Hospice care. When my husband died (instead of me, I was the one under Hospice care), the Hospice dropped me since I no longer had a caretaker. They dismissed me with Oxygen at 4 liters a day and no caretaker and no medications at all. I went to a friend's barn, where she had a tiny apartment for people who brought horses for a day or so and laid over. I lived there about three months, learning to walk again by taking my walker and walking the length of the barn several times a day until I could then walk with a cane. I weaned myself off the oxygen and no, I did not die. The doctors had made a terrible mistake. I think they realized it after I had been under Hospice care for 13 months. It was only the Fibro, along with the other problems which are listed below where you ask for them. I was not terminally ill. Apparently though, my symptoms were so bad that 13 doctors at the great Parkland Hospital thought I was terminally ill. What a nightmare. But in retrospect, it was the best thing that ever happened. I now take mild opioids to take the edge off the pain, Prednisone which is said not to help with Fibro but it works great for me and I take 10 mg daily and have for 10 years or so. I take Lasix and Potassium but it's not related to the Fibro but is necessary because my heart does not function properly and I retain fluid. It is remarkable that this is all the meds that I take now.
If I can control the pain, I have a relatively normal life. If I don't hurt, I can function as much as my other diseases will let me. I am also almost 63, so I am no spring chicken either. I have breathing problems and have trouble when allergy season is upon us. I have to keep my apartment dusted and stay out of irritants in my environment. Discounting the problems from the other diseases that I just mentioned, I can drive, work at my pet sitting duties, manage to keep my room neat and tidy as well as myself groomed, get my groceries (although I often need a wheeled cart or help to carry them to my apartment), and go about everyday life with a relative amount of ease.
I lost my husband in 2006 and I am without any living family members at all. I now live with my roommate, Shirley, in a nice senior complex in Farmers Branch, Tx, a suburb of Dallas.
Do you have any other medical conditions along with fibromyalgia?
Interstitial Lung Disease, Congestive Heart Failure, Chronic Kidney Disease, Cirrhosis of the Liver from having Hepatitis C (which my Christmas present last year was a negative Hep C test. It seems somehow my body has cleared itself of the virus) and of course, Fibromyalgia. That's enough, I believe. You can see why the doctors thought I was terminal. And they take the credit for my improvement, calling me a "medical miracle"... but we know it's my own care and a lot of prayers answered by God.
How has your life changed with Fibromyalgia?
Oh, my, that's a hard one. It changed everything about my life. I had to retire from a job I lived and loved after only 9 years. I have already told you about my stay in Hospice. I feel the strain of living with a wife with Fibromyalgia greatly affected my marriage. I am so lucky that I found and married my soul-mate. He was diagnosed with a brain tumor after we were wed 18 months. So I took care of him a number of years before, as he put it, before I developed Fibromyalgia and the other diseases, and he says that it was his turn to take care of me. He died from lung cancer, never knew he had it, and that was the biggest blessing he could have received. But I know his increased smoking killed him and stress from the constant worry over both of our health related issues caused his increased smoking.
Today, Fibro affects my every moment of every day. My friends never know if I can keep appointments or plans I make with them, and I try to not make plays, usually I say "I will join you if I am feeling like it". But my friends roll with it and they try to be understanding Some of them have just given up on asking me to go and do things with them, feeling that I "really just don't want to go or that I will have to cancel".
I have only had to cancel my petsitting work once and that is amazing but most of the time I go whether I am really able or not. My clients depend on me, and I am in a "home enviroment" where I can rest at their home just the same as I would at my own apartment. When I go to a job, I have to pack and load my clothes plus my food for however many days I am staying at someone's home for pet sitting. That is the hardest chore I do and most of the time, I do it in stages and then it is manageable. But sometimes I have to do it on a day when I'm in a lot of pain and it's very, very hard, because carrying bags from the house to the car is quite a distance. Pet sitting isn't hard on me, as I stay in a person's home and usually the most strenuous thing I do is to let the pets in and out of the house to the yard, plus I must feed them and give whatever meds they require, if any. I no longer take clients that have pets which require walking, because it is too hard some days and I can't walk very far at a time (due to the lung and heart problems as well as the pain of Fibro). And, I would never want to have to tell a client that their dog got away from me because my numb hands turned the leash loose when I thought I had a good grip on it. So I can't do that at all, no dog walking, and it's more for the safety of the pet. I choose a day to do grocery shopping when I am able to walk well and breathe easy. Sometimes I just go in and get some yogurt or an easy to prepare dinner because that is all I can manage until a day comes when I am able to buy the rest of my grocery list. Something else I don't do at home, I don't make the bed because it wears me out terribly to do the activity required to change the sheets and make up the bed. Silly? I don't know why that one activity is so hard, but it just is. I have to wash and replace the linens on my client's beds when I sleep there, so I don't have a choice in doing it then. But I just don't do it very often at home.
I cannot stand extreme cold, even having a refrigerated container up against my skin causes a red whelp to appear, not unlike a burn. But it itches and tingles instead of burning in the way that it feels. It goes away when I get that spot warm again. Going outside in the Winter, or sitting in front of a car's air-conditioning vent in Summer, can cause the same affect. In Winter, Texas doesn't have very many really cold days, thank goodness. I try to not go out unless I have to on days that are below 45 degrees.
In Summer, the heat smothers me and in TX we do have heatwaves where the temperatures are in the triple digits for several days in a row. Last week on Thursday, it was 103 on my thermometer at 3:30 p.m. Food, I don't have the abillity to taste my food like I used to, so I don't much care what I eat. A container of yogurt is just fine, add some berries fand some protein powder for extra nutrition and I'm good. Or some meat and a couple of veggies, it all tastes the same on most days. It makes shopping pretty easy because I usually buy the same 10-12 items and I know exactly where they are in my store, so it takes me only a few minutes to shop. As far as "going shopping with the girls" or "eating out with the gang", I don't get to do that very much. They get to where they assume I won't want to go and don't even bother to ask any more. I've had to say NO so many times, they hate to even ask me and make me feel sad when I can't go with them.
One medication I don't have to take anymore is an anti-depressant that is usually a basic medication given for Fibromyalgia. I guess my faith is the reason I am no longer depressed. I know I must have every reason to be depressed, but I don't look at having this disease as a burden. I look at it as being a test that has made me so much stronger in my walk with God. He gives me my strength and directs my actions and allows me to have the strength to help others. We all have our form of therapy. Mine is in giving back......
How has fibromyalgia affected your relations?
I don't have any family left. When my husband was alive, from 1986-2006, he took my Fibro-flares in stride. He was ill with a brain tumor and seizures, migraines, and other problems; so he didn't think putting up with my problems was very much to ask. Most of the time, I was suffering with fatigue and in pain, but I tried to not let him know. Of course, there are days you can't hide it. His mom lived with us a couple of years and after being around me and seeing how it affected my life every day, she decided it really is a disease. She was one of the "doubters" that Fibro even really existed as a disease. You can't SEE it, and it doesn't make you SICK, so it can't be an illness.....right? A lot of people are of this opinion, sadly.
My roommate, she rolls with whatever I can do on any given day, and whatever mood I am in. She is loving and supportive and knows to leave me be when I need to be alone. My door is shut at those times and she seldom bothers me. When I am outgoing and feel good, which thankfully is most of the time, we have a very good friendship and since she is such a light-hearted person by nature, we have a lot of fun times. I could not have been luckier in my choice of roommate as when I found her. She is the most understanding person that I think I've ever known. She had a friend before me that was diagnosed with Fibro, and she had visited with her on the phone a lot. But I was the first victim she ever KNEW and was with in person. It helped her understand what the other friend was going through by seeing how it affected my life. She even helps me when I just can't manage to make my meals or if I don't feel like carrying my bags to the car to go on a pet sitting job. I am so blessed.
So basically, my friends are my support group. I try my best to not be grumpy or snap, but I am human and Fibromyalgia brings out the monster in all of us. They seem to understand these times because they genuinely care about me.
How has fibromyalgia affected your career?
I had to retire in 1998 because I just couldn't manage to do my routine chores any longer. I have told you above what I did for a career, a ranch manager and horse trainer, and this job was very demanding physically and emotionally. Having a debilitating disease prevented me from being able to work as ranch manager as long as I would have liked. I had to retire from my "dream job" after only 9 years because I just lost the ability to have enough control over my muscles to safely handle horses and operate farm equipment. I was one of the first people in the USA to receive social security disability with the diagnosis of Fibromyalgia and I received it in 2001 after 4 years of trying.
What kind of specialist you are consulting?
An Internal Medicine specialist. I used to see a Neurologist but he passed away and my insurance company referred me to my current doctor as a primary care doctor and I like her so much that I just use her as my "specialist" for treating every disease I have. She is the only one that has questioned my Prednisone use. She was shocked when I had a bone density study done and my bones are still in perfect condition after 10 yrs on a daily regimen Prednisone. That convinced her that I tolerate the drug well enough to continue prescribing it for me. She also prescribed the drug that is FOR Fibromyalgia pain: Lyrica. I can't take it because my liver is bad enough from having Cirrhosis, I don't want to put any more chemicals through my liver than the ones I already have to. She asked me about the pain and what did I want, so I told her a little hydrocodone would be nice. So she gives me 30 half-strength tabs a month. ANYONE with Fibro knows that this is not nearly enough opioid to acheive pain control. But in the US, it is so hard to get doctors to prescribe enough pain medication. And you must see a separate specialist for your pain medication if you are prescribed anything much stronger than Hydrocodone.
Has your medication changed over the years? What medicines you are having now and are they helping?
Just discussed this one above.
Have you tried alternate therapy? Did it help you?
No alternative therapy. I use ice or heat a lot as well as taking warm showers with a massage attachment.
What are your personal tips for relief?
Do what is necessary to obtain the best quality of life that you can. I feel that if you are shut down all the time, that isn't living. Try to avoid stress or situations that bring on flares. Talk openly with friends and family and bring them articles or anything to help them understand about Fibromyalgia and how it controls your life and what they can do to help or at least to understand how it affect your life.
Do / Can you exercise? What exercises do you do? Do you meditate?
No I do not do either. It makes me hurt to exercise. I walk some when the weather allows it. But I tried it for several months a couple of years ago because "everyone" said to make yourself exercise. It increased my fatigue 100% and also my pain by 50% and I did try for several months before I decided it wasn't going to make me better. Some of the lack of ability to exercise is due to my heart conditon because I have a hard time walking on a normal day, so forcing it may not have been the thing to do. I am glad that it works for most people, it just doesn't for ME.
Have you changed your diet / gone gluten free and did it help you?
Not gluten free. I eat what I like and what I can taste. I avoid processed foods and foods high in sodium. I try to cut down on my sugar consumption and eat more fresh foods, especially fruits and vegetables. Also, I have changed how I prepare my foods by not frying at all.
What would you like to say to people who know someone with fibromyalgia?
BE PATIENT and TRY TO UNDERSTAND HOW THEY FEEL. LISTEN TO WHAT THEY ARE TELLING YOU ABOUT HOW THEY FEEL AND WHY THEY CAN NO LONGER DO THE THINGS YOU ONCE ENJOYED TOGETHER. SHOW THEM LOVE AND UNDERSTANDING! BE A TRUE FRIEND BY SHOWING YOU REALLY CARE, EVEN IF THAT MEANS GIVING THEM SOME SPACE AT TIMES.
What would you like to say to doctors?
I can't say that here and keep it clean enough to publish. (teasing).... My current doctor and the old neurologist that first diagnosed me are the only two doctors that I have seen for Fibromyalgia that have had any compassion and have tried to work with me and understand the problems I was experiencing. My current doctor is really good to take the time I need to tell her how I am really doing. She allows me to voice my concerns and to participate in the choice of my treatment. But through trial and error and with time, I have found a "cocktail of medications" that works for me.
What relations and activities makes you feel better?
I enjoy your site on FaceBook and I read how this disease is affecting so many others. I try to participate when I know something that may be beneficial to someone. Activities that make me feel better?.....I think being alone when I need to be is important. Watching movies and reading help me relax. Just sitting and talking with friends about every day happenings makes me feel like I belong and that I am involved, not an outsider with Fibro. It's important to me to live as normal a day-to-day life as possible.
When did you join the Fibromyalgia Awareness blog www.fibromyalgiaawareness.com / the blog's Facebook Page? What do you think about our awareness initiative?
I have been with you a few months, maybe not quite 6 yet. I like what you are doing, that people can post when they need help and that we are given a chance to share our feelings and suggestions to possibly help someone else; especially those who are newly diagnosed. I think public awareness helps the public to know about our disease, especially those who are not directly connected to someone who suffers with Fibro. And your blog is focused on this one thing.
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Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
---------------------------------------------------------------------------------
Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
Interview
published on 1st October 2013. This blog and its owner have the
rights to this interview. Do not copy the interview on your website /
print / publish elsewhere without our prior approval that includes the
approval of the interviewee. However, you can share the link of this
interview to help us raise awareness. The opinions in the interview are
solely of the interviewee and we do not advocate the use of medicines /
drugs, if any, mentioned in the interview. Kindly consult your doctor
before starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
---------------------------------------------------------------------------------
Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
Anuradha I am now relieved from my back ache (though tenderness and little right leg pain is there) and I am happy and telling everybody that I am gonna get out of it within 1-2 max to max 5 months...
ReplyDeletePlease say I will recover soon.... But how can I, if others couldn't...
If I recover, I will suggest everyone to go to my Doctor...
I am 83 years old and have had Fibromyalgia for about 16 years. The Nsaids did not help me at all. My doctor finally put me on Flexoril, Fluoxitine and another med to help me sleep. It helped the pain and I was able to live a pretty normal life except for flare ups. After a few years I started blacking out and the doctors didn't know what caused it so they put me on seizure medications. That controlled the seizures until 2010 when I blacked our again while driving. My daughter thought I should sell my house and car and move to northern Idaho by them, so I did.
ReplyDeleteAfter moving up here, my blood pressure started being high in spite of taking blood pressure medicine and I started having an irregular heartbeat. After seeing a Cardiologist, he looked up Seratonin Syndrome on the Mayo Clinic website and printed up 8 pages for me. I found that all three medications I was taking were Seratonin boosters and if you take more than one Seratonin booster you are at a higher risk of getting Seratonin Syndrome which can cause you to black out and die. Two of the symptoms of a severe case of Seratonin Syndrome were seizures and irregular heartbeat. I told my doctor I wanted off of the medications. He didn't think I had Seratonin Syndrome but he told me to taper off the medicines. After a few months, the pain came back with a vengeance so he put me on Gabapentin. When I saw that a side effect could be an irregular heartbeat, I tapered off of that medicine because I didn't want to take any chances. While tapering off of it, I had an attack of Atrial Fibrillation and ended up in the ER for 2 days. After all of that medication got out of my system, it take a while, I haven't had any more heart problems. I told my doctor I refused to take any more Fibromyalgia prescriptions. All I take is Vicodin for the pain which helps except for when I have a big flare up, then it doesn't help as much.
So you need to be careful with the medications you take and don't take too many meds that are Seratonin boosters.
I feel sorry for the young people who get Fibromyalgia and hope they find a cure for it. As for myself, I am old enough that I won't have too many years to live with it. Heaven will be wonderful with no more pain.