Each week I am featuring a different Fibro Warrior. I’ve been sharing the stories of some of my friends and members of my local Fibro Support Group. Today’s interview is with Lisa Heiss, another friend from my local support group. You can find Lisa on Facebook.
When were you diagnosed?
I was diagnosed in 2009, shortly after I had a total hysterectomy, although I have probably had it for most of my life. I remember that, when I was recuperating from surgery, I started having the most agonizing burning pain all over my body. I was in so much pain that I would curl up in a ball and cry! I knew it wasn’t related to my surgery, and I went to my Family Practitioner and told her about it. I was sent to a Rheumatologist, and he poked and prodded in certain places on my body and I very nearly came up off of the table at him, especially when he pressed on my sternum! He said, “You have Fibromyalgia” and my immediate response was “What in the world is that????” I had never even heard of it!!!
It took a long time to get regulated on nerve pain medications because I am both high tolerance, meaning that it takes a very high dosage –and often over the recommended limits –for me to get a response out of a medication, and high sensitivity, meaning that I will react to a medication long before I get to a therapeutic dosage if I am going to have a reaction. There are many medications that I don’t tolerate at all, so finding a combination of drugs that helped me took almost a year, and in the meantime the pain was excruciating. I had been seeking answers for my entire adult life, and I was relieved to find out what was causing at least some of my symptoms.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I do know, looking back, that I have probably had Fibromyalgia since childhood. I was having migraines, a common symptom, since I was about 7 years old; I also had leg cramps that were horrendously painful all throughout my middle school and high school years. They were so painful that when I would march in our high school band I often had to drop out of formation for periods of time until the cramps subsided and had to be pulled out of parade formation and into a following vehicle when I could no longer march. I always tried to stay in formation, but when parents saw me at attention and tears were pouring down my face, they pulled me out. It was humiliating to me as a teenager, to say the least.
I do know, looking back, that I have probably had Fibromyalgia since childhood. I was having migraines, a common symptom, since I was about 7 years old; I also had leg cramps that were horrendously painful all throughout my middle school and high school years. They were so painful that when I would march in our high school band I often had to drop out of formation for periods of time until the cramps subsided and had to be pulled out of parade formation and into a following vehicle when I could no longer march. I always tried to stay in formation, but when parents saw me at attention and tears were pouring down my face, they pulled me out. It was humiliating to me as a teenager, to say the least.
The migraines became worse and worse over the years, until in about 1991 they became daily, excruciating, throbbing headaches instead of the ones I had been getting only a few times a year. They didn’t respond to anything, and a neurologist I was seeing at the time, who specialized in headache treatment, was confounded. Then I described how I was falling asleep during the day when I was at work; even when I was standing up, eating, or doing anything at all! He sent me in for a sleep study, and I was setting off all of the alarms during the first hour of the study. The study was stopped immediately and a cpap titration study was continued throughout the night. I was diagnosed with extremely severe sleep apnea with a sleep score exceeding 220+ episodes per hour, with a significant number lasting for a minute or more. [This indicates that she stopped breathing this many times per hour].
After that I had to have surgery for not only the sleep apnea, which took three surgeries, including a mandibular extension which involves breaking your jaw and wiring it shut for a month, but I also had many other surgeries, including three for severe carpal and cubital tunnel syndrome, 2 for my knee, which resulted in a total knee replacement, and surgeries for gall bladder removal, and the hysterectomy. I also had spine surgery to put in a spinal neuro stimulator due to severe spinal damage from top to bottom, leading to severe pain that was unresponsive to conventional treatments, as well as a number of sinus surgeries, among other procedures that have been needed to be able to maintain some semblance of a normal life. There were frequent sprains, strains, and other soft tissue injuries over the years, much more than is normal for any single individual who isn’t in any kind of sports. Despite all of this, it was the burning pain and the constant flu-like symptoms that lasted for weeks and weeks that finally tipped off my doctor and led to me being sent to the rheumatologist for the final diagnosis.
Where you working at this time?
Yes, I was working at a retailer who is nationally and internationally recognized. I was on medical leave of absence for my hysterectomy, but was back at work by the time I was sent for treatment. I had to deal with the awful burning pain and flu-like symptoms and also manage to do my job at the same time. It was awful!!
Working was so difficult that I would drag myself into work in the morning and try to get clocked out and home before the afternoon cycle kicked in. I could practically set the clock to the times in the day when my Fibro pain was most active and intolerable. It would hit suddenly at about 3 or 4 PM and last through the evening and into the night. I finally would fall asleep–usually crying–and awake stiff, sore, and in agony again. About 10 AM it would subside until the afternoon cycle began and then it started all over again. One day when I had to work second shift, I was in the break room crying due to the amount of pain I was in. Working first shift was better for me because I was able to get through most of my shift during the “off time” when my pain cycle was least active, so second shifts were a nightmare to me.
Day after day after day it went on like this, and it became very depressing. I was feeling hopeless for a long time by the time I was able to get some relief from medication. I was fortunate though that I was able to take medical leave as often as I needed it, as long as I saved my time in between. I also took out long and short term disability insurance, and that was the smartest decision I made when I signed up for my benefits. I knew plenty of fellow associates who didn’t and lived to regret that decision.
What was your family life like (married? kids? etc?)
I was married before I was diagnosed with Fibromyalgia. My husband has seen me go through so much in the years we have been married. I was an active person who burned the candle at both ends and didn’t know when to quit. At first, after we were married, I was able to keep up with everything: work, cleaning and cooking at home, and also keep up with my family. I was a caregiver for a very sick father, relieving my mother by taking him to the doctor’s visits, tests, procedures, etc. I also was keeping up with my nieces and nephews, who were like my own children to me and still are. I was also a department manager, accounting clerk, cashier, and so much more at my job. I went from keeping up with the “Jones'” so to speak to barely being able to get out of bed in the mornings, much less being able to keep up with anyone else. We also wanted to have children more than anything but weren’t able to due to the severe endometriosis and PCOS (poly-cystic ovary syndrome) and the severe damage that was done to my reproductive system. The physical pain from the bursting cysts was bad, and I was bent over double for a significant number of days out of the month, so surgery was ultimately my only reasonable choice. Having to decide to have the hysterectomy and ending my quest to have my own children was a horribly difficult and painful decision to have to make. It took me a very long time to be able to quit crying every time I saw a pregnant mother or a mother with her young children.
How did your family initially handle your illness?
They had been watching my pain and other issues over the years develop and the severity of the symptoms. They were at first just relieved to know what was causing everything, but Fibromyalgia doesn’t account for all of my problems and it is an ongoing process trying to find out what is causing the other symptoms. This has been a great learning experience for my family. While some friends and family have not been very supportive or understanding, those who are closest to me have been tremendously supportive from the beginning. My mother and my husband have been tremendously supportive from the beginning. I appreciate them so much. As for the rest, I can only hope and pray that one day they will come around.
How has your family/ work situation changed since Fibromyalgia entered your life?
My work situation has come to a complete stop. I lost my first job, my chosen career, long before I understood that I had Fibromyalgia. I used to be a professional educator and was unable to teach after I was so sick with the sleep apnea. It took me a very long time to get to the point of having the surgeries for that, and I was cured for about 8 years; that didn’t last, however, as I wasn’t told when I had the surgeries that it always ultimately fails. I don’t regret having the procedures as it gave me 8 years free of those symptoms, and I am severe today but not as severe as I was at the time when my O2 levels were down to 60%. Had I not had the surgeries when I did, it might have been fatal in time. I had to give up my second “career” two and a half years ago, following the Fibromyalgia diagnosis.
I was approved for disability in record time. I received my approval only 5 months after my appeal and less than a year after first applying. My doctor explained in her recommendation letter that I would be unable to ever maintain any meaningful type of work ever again. The day I read that letter was a very sad day for me, and it lead to a period of grieving. I went through the range of emotions: denial, grief, depression, and finally acceptance, although I still struggle with the acceptance part at times. It can be very difficult to accept that my life is forever going to be a life filled with pain, loss of the activities I once enjoyed in the same way I enjoyed them. Having to accept that I can never again be in a classroom with the kindergarten children I so enjoyed working with day in and day out has been extremely difficult. Even a day of shopping or a ride in a car for a vacation is not something I want to think about anymore due to the amount of pain involved.
What do you feel is the most challenging aspect of Fibro?
I think that the most challenging thing about Fibromyalgia is learning to both alter my activities to accommodate what I can do or not do, which is so limited right now due to my spinal issues, and pacing myself when I am so prone to going full tilt all of the time. This life of counting spoons is not something that comes naturally to me or to other people with Fibromyalgia. Having to think to myself that when I have a family wedding, for example, I have to save my energy up for days prior to the event or I won’t be able to make it through the day is something completely foreign to me.
Another challenging aspect is dealing with the 50% of the medical community and the many normal citizens who don’t know or accept that Fibromyalgia is a real and proven disorder that affects everything we do and the way we do it. That is hard enough from the everyday people in our lives, but having to fight fully half of the medical community who should know better and not tell us it is in our heads is very hard for us.
Do you have any other co-existing conditions you haven’t mentioned? If so, what are they and how do they impact your Fibromyalgia?
Yes, I have an unbelievable number of them: sleep apnea, daily chronic migraine headaches, leg and other body cramping, muscle spasms, joint and spine damage, acid reflux, gastroparesis, possibly IBS, diabetes type II, adrenal disease (insufficiency) , hypothyroidism, MRSA infection susceptibility which put me in the hospital last year with a huge abscess on my side which required surgery and painful dressing changes for a couple of months, B-12 deficiency which is called pernicious anemia, vitamin D deficiency, low iron anemia, high blood pressure, dizzy and light headed spells that have led to many falls and near fainting spells, orthostatic blood pressure issues, and most recently low immunology panels that have led to a year of constant infections and having to get booster shots. Some of these and many other symptoms have been from something that is yet undiagnosed and for which I have most recently had to see an immunologist. I am hoping for more answers soon. I believe I have some kind of autoimmune disorder, but I just don’t know what it is, and that is the most frustrating thing of all.
What (if anything) have you found/ done that has improved your symptoms?
For now, I have to take it very easy to control my spine pain due to a worsening of symptoms. I had a spinal neuro stimulator put into my cervical and thoracic spine about a year and a half ago, and it has been very effective for me. It emits a radio signal through the leads in my spinal canal and into my brain and stops the pain signals from even reaching my brain. No signal, no pain. I am having one put into my lumbar spine, as the other one is not effective there due to lack of coverage, and with it being so effective for me in the rest of my spine, I wanted to do another one and skip the pain pump alternative. I take enough medication without adding it being pumped into my spine full time. The second unit is necessary because leads can’t be added to the one I have due to the battery not being strong enough for extra leads. I completely recommend it to patients with spine pain rather than fusion surgery. This worked for me right out of the OR, and it is the only implant you can test run before surgical implantation, so before you sign on for surgery, you already know it will work. Other things that work for me is remembering to pace myself, something I am not very good at, taking lots of breaks during the day, changing the way I do things so that I can make my muscles work more efficiently, water therapy when I am able to get it, and stretching my muscles out often during the day so they don’t get so stiff and sore. I get reminded quite rudely if I don’t do that by my hurting muscles, and especially my legs.
What is the best advice you’ve received regarding Fibromyalgia?
The best advice I ever received was to pace, pace, pace and stretch, stretch, stretch!! Those are the fundamentals of having this disorder. If you don’t follow them, everything becomes more difficult no matter what medications you might be on to control pain and other symptoms. You end up sabotaging yourself if you don’t pace and stretch. Pain becomes way too difficult to control.
The best advice I ever received was to pace, pace, pace and stretch, stretch, stretch!! Those are the fundamentals of having this disorder. If you don’t follow them, everything becomes more difficult no matter what medications you might be on to control pain and other symptoms. You end up sabotaging yourself if you don’t pace and stretch. Pain becomes way too difficult to control.
One other word of advice is to control your stress. I have had a lot of family and other personal problems these last couple of years that have added to the stress of being in pain every day, which is stressful enough, and it has added to my pain levels exponentially. It is important to try to limit your stress levels; this means eliminating the stressors, including the toxic relationships. Allowing myself to do this is something I am still working on.
What was the worst advice that you followed?
I am quite fortunate because I was able to get into a local support group, where I met Julie and our fearless leader, Dawn Pulliam, so I was able to get very good advice from the beginning. I was also sent to Huntsville Land and Pool with Ande Bauman, who has a program specializing in Fibro patients, as well as being sent to Rheumatology Associates and getting in with Tim Byrum right away, and he is the best at treating and managing fibro medications. I really can’t even think of any really bad advice I ever received. Even my family tried to learn right away what fibro is and how it is treated and managed. I have had such a great team around me from the beginning that I have absolutely no complaints there.
I am quite fortunate because I was able to get into a local support group, where I met Julie and our fearless leader, Dawn Pulliam, so I was able to get very good advice from the beginning. I was also sent to Huntsville Land and Pool with Ande Bauman, who has a program specializing in Fibro patients, as well as being sent to Rheumatology Associates and getting in with Tim Byrum right away, and he is the best at treating and managing fibro medications. I really can’t even think of any really bad advice I ever received. Even my family tried to learn right away what fibro is and how it is treated and managed. I have had such a great team around me from the beginning that I have absolutely no complaints there.
What is your advice for those who have just been diagnosed?
I strongly recommend to those who are newly diagnosed or who have never had good treatment and management advice to get a good team around them and get into a positive support group. A good support group doesn’t wallow in the bad things and works hard to build each other up and support each other daily. Our group does this, and although we are allowed to vent temporarily, we don’t ever stay there and give suggestions for coping to the one who is struggling with their symptoms, treatments, stressors, and other issues that they might be dealing with: after all, it might be me or you the next time. Finally, be proactive in your medical care. Look everything up; ask questions and don’t take anything for granted.
If you are a Fibro Warrior, I would love to share your story. If you would like to share your story, please email me (Julie)
Vicky Jackson says
Lisa, thank you for sharing your story…You have definitely been through a lot; a true Fibro Warrior!