My Story: Debora McNicholas

NewLifeOutlookNewLifeOutlook New Life Outlook
edited August 2014 in Stories

imageMy Story: Debora McNicholas

I was diagnosed with a rare virus and subsequently Fibromyalgia. Just knowing what was happening to my body brought me comfort.

Read the full story here


Comments

  • I have all the same symptoms that Debora spoke about in her story, and I would like to join your group so I can have a support group in which to share my pains and feelings!
    Sara from So. Calif
  • jpsjps Member
    Thank you Debora for sharing , I am a nurse with Fibromyalgia , Sjorgren's Syndrome ,Osteoarthritis , Migraines , etc. I continue to work , but it is getting harder and harder to do so . Recently massage therapy has been helping . Fibro is weird , you can go on for awhile and start to feel fairly good , then for no reason you get a flare-up and everything hurts . I take meds and daily supplements . I get cortisone injections in major joints, see a chiropractor when necessary. I see a Rheumatologist every few months. But I try to control this ,I do as much as I can , then rest . I find myself taking a lot of naps . It is the only way to function . I know my limitations and this is how I have to live . My husband is very understanding , for that I am lucky. A lot of the older doctors do not understand Fibromyalgia , it was a term that was used incorrectly! Find people that truly understand Fibromyalgia , don't waste your time and money on those who don't . I had one older orthopedist to tell me , I shouldn't put Fibromyalgia as one of my first diagnosis, because he and others are from the "old school" of thinking , we go in thinking you may have mental issues. He was honest to me , I appreciated that. So be sure !
    Take Care!
    jps
  • Hi jps!

    Fibromyalgia is weird! When I was laid off in 2009 from a job I loved. It was because I had a hysterectomy and my recovery time was much longer than expected, likely due to Fibromyalgia. My boss was kind in that he and human resources decided to lay me off instead of fire me so I qualified for unemployment and could find another job. I tried to work full time one additional position and missed too many days due to illness. I caught crud my co-workers would bring with them to work and Fibromyalgia symptoms made it impossible for me to leave my bed, or migraines. I get cumulative fatigue. I can work a few days, feel okay, but as a week passes, my ability to function decreased with each passing day until I was home for several days at a time. Employers can't have people like me working for them because I am unreliable. I wish it were not so because I am intelligent and I did enjoy my career as an insurance professional. After I failed at hat full time position, I tried working with a staffing company who had placed me in the past only this time with employers who needed temporary or short term personnel. Although the folks at the two assignments I tried liked me, they observed my inability to function. I was severely fatigued, had cognitive problems, and pain. My migraines became an even larger issue as I stared at a computer screen all day. Any calls I took made my ears ring painfully and I was also responsible for accounts receivable. It would take me several attempts to manage that task and its accompanying Microsoft Excel spreadsheet. So I finally gave in and quit work permanently. I have filed for disability with Social Security but it is a slow moving wheel unfortunately. Meanwhile I lost my insurance coverage and have not been able to afford to go see my primary or specialist as much as needed. So I wait. I am in the process of trying to find a clinic that will see me on a sliding scale perhaps. I live with my son and he is only 23. He is way beyond his years and works very hard to take care of me and his brother. We are a close family so it works. It would be good though for him to move on and reach his potential. It's much slower pace reaching his goals with us here with him. As with everything in life, usually works itself out. Regarding Social Security, I hired an attorney to help me. There is no way I could have navigated that process alone. I wrote this article new life outlook published, but it took a couple of weeks to form all the information into one cohesive thought process. It's frustrating at times but writing this piece was rewarding in that perhaps others will see themselves in my story and have hope. It's easy to lose hope and we are definitely on a roller coaster in life. Fibromyalgia has a mind all its own. Just when I think I have it or any of my other illnesses under control, they make a liar out of me! Haha!
  • @gpage10

    Here is the link: https://www.facebook.com/groups/214133368761306/

    I am not always the moderator, we share that responsibility. Fair warning, there are times we don't moderate at all because we are all suffering and too ill to bother with Facebook. Our members will keep discussions going when we are absent. Send us a request and one of us will accept your request. Would love for you to join us.
  • I have just felt an increadible sense of relief reading this story identified every thing I 've been living with. I don't feel as isolated.
  • @DeboraMcNicholas_4
    Your story sounds like a replica of mine. I too, was a very outgoing snd successful insurance agent but Fibromyalgia ended all that for me.I am also in the waiting period for disability. I live alone and that in itself is my biggest issue. I have friends but it's not the same. I'm in a severe depression n will be homeless in a month. I'm so lost I'm constantly thinking of just ending it all. I'm so glad to see stories like yours, it gives me hope.
  • jellybeanjellybean Member
    edited August 2014
    My story sounds a lot like yours. The really hard part I is having nobody to talk to. My kids are great and very understanding, but I do often run into others that seem to think that I it can just be ignored. I get the attitudes like oh just suck it up or things like oh well it can't be that bad. I get tired a lot and i hear from some family that I make things worse by giving in and taking naps sometimes. I feel so alone sometimes. I get really depressed also. Especially when ppl. Tel me that if i push harder I'll feel better. I also suffer from vertigo and migraines, IBS and osteoarthritIs in my back. I feel like some ppl. In my life think that it's not that bad or I'm making it up to get out of doing things. I wish there was a support group in my area. Thank you for sharing your story it helps to know there are others. I would love to join your Facebook support group if I could.
  • My name is Pamela and I too have fibromyalgia and it have been the worse thing in my life to happen to me. I too have muscle aches from head to toe and joint pain, fibro fog always. osteo arthritis, rheumatoid arthritis, restless leg synd., degenerative spine ( with back surgery) there's not a part of my body that doesn't hurt and did I mention depression?? If this is not bad enough I also have fatigue all the time and take a lot of naps. When I do get energy I go 100 miles an hr. trying to get everything done I need to but then I will sleep for 2 days. I try to do as much as I can but it never works in my favor. My family doesn't get it not even my kids understand the lengths this thing goes. My husband is wonderful and care deeply for me and helps me a lot but he has to work because I lost my jobs (several of them) 17 yrs. ago and have not been able to work since. I got divorced and had to go to work for the first time to a real job and met my husband there and good thing because I had an injury and stress from the divorce which my Dr. said led to my getting fibromyalgia. I take medicine for every symptom and pain medicine which makes me sleepy so I can't drive when I take it which in turn leaves me stranded a lot of the time and forget about driving at night. I hate this thing called fibromyalgia so bad it males me angry a lot. I would not wish this on my worse enemy. I hope they can come up with some type of medicine for this bad thing and we'll only have to take one pill for it not a pharmacy full of them. I wish all who have written in on this blog the best of luck and to find happiness where it can be found.. Thanks for your time.
  • momma21 here again forgot to mention I do no qualify for disability of any sorts. With the meds. I take it cost a lot of money and I have good insurance but the out of pocket is very high. I do not have enough quarters in to draw and this has sure put a damper on the household income. thanks again for listening.
  • @adryg you hang in there and never do anything foolish to yourself. There are people out there that cares deeply for you. I too, get depressed and wonder why me but remember there will come a time when this to will be ended by smart people who will find a cure for this for us. Friend if you ever need one..
  • Thank you for creating this page. I appreciate the stories and support from other fibromyalgia sufferers. It helps to have confirmation that I am not making up this pain and fatigue. It also helps to hear others say that they too need to rest, a lot! I was diagnosed 2 years ago with fibromyalgia. I also have IGA deficiency, asthma, allergies, depression, anxiety, GERDS, IBS, RLS. As a type A personality, I lived an organized, very happy, and busy life for many years. I enjoyed working and caring for my family. The IGA deficiency forced me to stop working, but I still had some things that I could do, like keep the house clean, and I could still participate in church activities and do things with family and friends. Since the fibromyalgia started, I find it hard to get much of anything done and I cannot promise to go places on specific days. Some days are good, but more than half of the time I am tired and in pain. It was worse before the diagnosis and starting on savella. I look forward to posts from others who have tips on management of this problem as well as the encouragement and support.
  • generally don't feel it necessary to tell my story... everyone has their own problems. I don't have to let everyone know all my whoas. I know people don't know what to think of me because I say no a lot. I don't feel the need to explain to people why I say no to things. I don't join things where I have to make a commitment because I never know how I will feel. Having said all that, I will say that there were those people who I did confide in. (Like family and co workers) and I know that most didn't understand and I got comments like - everyone they know have been diagnosed with FM. And that is pretty much true. There has been a lot of careless diagnosing of that illness. After I was diagnosed, I dealt with years of muscle pain and joint paint. The fatigue was awful and the lack of desire to do anything got worse and worse as I aged. I developed a positive ANA and the Drs don't believe that it is a sign of anything. Gradually, a whole slew of illnesses or conditions like migraines (scintillating Scotomas) , repeated bronchitis when I caught a cold that turned to Asthma, stomache pain, nausea, IBS,ringing ears, throat ache , esophageal motility abnormality, hoarseness, osteoarthritis, osteoporosis, Fructose and lactose intolerance and B12 deficiency, were added to my list and I realized that I sounded crazy and there was no point to explain to others what was happening to me. I have never applied for nor will I apply for disability. The reason for writing today is I found something that has helped a lot of my symptoms. Being diagnosed with B12 deficiency and fructose and lactose intolerance made me adjust my diet. Removing fructose related items and dairy as well as adding my B12 shots has made a difference in my fatigue and muscle pain. I urge everyone to try a dairy and fructose free diet for at least 3-4 weeks and see if it helps your symptoms. when I cheat and add any of those items back into my diet, my shoulder and neck muscles ache, I get brain fog, fatigue, nausea, headache and an over all feeling of being unwell. Try limiting your white sugar intake and try getting fructose (fructose corn syrup, corn syrup, honey, Brn sugar, molasses, soy sauce, aspartame, to name a few) out of your diet. You can find a whole list of things you need to avoid on a fructose free diet on line. What would it hurt to give it a try?

    If you drink diet soda, there is a huge possibility that it is causing a lot of your symptoms.

    OR are you afraid to get better because you wouldn't be getting the sympathy or attention that you get because of your illness? If you get those things out of your diet you won't believe how well you feel when you wake up in the morning. I still will have things to deal with, but at least getting rid of a lot of my symptoms makes life a lot more tolerable.I challenge you to give this a try. maybe it won't help you...but maybe it will!I
  • OH BTW...have you had your thyroid checked thoroughly...not by a GP but by a specialist who really can look at the Tsh, t3 and t4 and put those numbers in proper perspective. a lot of the symptoms for thyroid disease is similar to FM.
  • I personally don't think anyone uses this disease for sympathy because none is usually coming our way anyway.. If you think this is all a ploy for this sympathy as you say I personally think your WRONG!!! Ianirach....
  • I was recently diagnosed with Fibromyalgia. I had my last child at age 39 just 19 mos after having my middle child. My final pregnancy was very hard and throughout I never quite felt right. My OB chalked it up to my age and that it was maybe too soon for another pregnancy. I never bounced back following the birth of my son. Again for the first year, I attributed it to post pardom and normal lack of sleep. After my son started sleeping through the night, I couldn't figure out why I still wasn't sleeping well. I was so exhausted and it was extremely difficult to have a newborn and a toddler. The chronic insomia (middle of the night awakenings) were so bad that each year I saw my OB I would tell him that I couldn't sleep which was so troubling to me because I had been a champion sleeper. I would toss and turn and get so frustrated then I developed IBS and TMJ. I literally thought I was going crazy. Still trying to parent the 2 small ones that I had at home with me and manage to muddle through my eldest son's 1st and 2nd grade year. I have very little recollection of this time (fibro fog) and that of course made me sad. I was prescibed varying anti-depressants with little help. I was sent to sleep specialist and diagnosed with sleep apnea. At one of the appointments with the sleep specialist, I told him that I was still waking frequently at night and he was the one who suggested that I might have FM and so 5 years after all the trouble started I was finally sent to a rheumatologist and given the diagnoses. I am glad to know that I am not crazy and that there isn't anything more serious wrong with me although FM is serious enough in and of itself. I was put on 60 mg of Cymbalta which has been increased to 90 mg. I still have quite a bit of pain at night that I try to control with Motrin. I am leery of other pain meds. I was so uncomfortable on my Tempurpedic mattress that I bought one of those expensive gel foam mattress toppers so the bed would seem softer and don't even get me started on how many different types of pillows I bought because my neck and shoulders ached. I had developed almost an aversion to going to bed because everything would hurt when I would lie down. Cymbalta has greatly improved many of these issues but I keep first and foremost in my mind that the rheumatologist had told me I would have some good days and some not so good days and if I could just realize that they would pass, I would do alright. So far the good days are still outnumbering the bad and I am so thankful to have some relief. Sorry for the rambling and I hope you will let me be a part of this community.
  • @momma21 amen! I get oh pity party for mom! They just think I can do what I did in my 30s when it wasn't so bad! I don't know how to get it thru their heads that the pain you live with every day is so draining on you!
  • @Zelda_McFarlane it is for sure a terrible disease and there would be a few people I would wish it on if I were that type of person. It is the most terrifying disease sometimes and on those days I just take my meds. and sleep in my chair, where I have been for most of the 18 yrs. that I have had this disease. Thank God I have a very understanding husband. He is the greatest and helps me a lot by his understanding and the help I have gotten from him. The rest of my family just don't get it and don't try to. This is upsetting but try not to let it because stress is a killer with this disease. I hope you have better luck in this department than I do, but if not don't let it bother you if you can because the end result is not in your favor. Hope everything works out for you and you find a happy medium for this evil thing..
  • I won't go into details about my story, only that I had so much stress in my life starting around 2009, that I developed symptoms. My doctor tested for R.A., thyroid, etc., and told me I had Fibro.
    I gave up diet drinks, and started eating healthier, but I have some days where it's painful to function and painful to sleep.
    I try to manage it, but my biggest problem is that my family doesn't seem to realize that this is a "real" health problem. If I talk about it, and tell them that I'm in pain & feel like I have a flu all the time, fatigue, etc., they roll their eyes and act like I'm a hypochondriac. They've actually told me I'm making this up. I have many responsibilities taking care of my elderly parents, twin grandchildren, husband and grown daughters. I've always been energetic and active, and now at 61, living is really hard. I'm depressed, but nobody seems to care. It's a very lonely existence.
  • @momma21 I soooo agree...
  • I personally don't think anyone uses this disease for sympathy because none is usually coming our way anyway.. If you think this is all a ploy for this sympathy as you say I personally think your WRONG!!! Ianirach....
  • Someone asked if any one else has numbness or tingling. I have some tingling in hands, I have some carpal tunnel starting but I have a repetitive job of using the computer mouse scanning all day. Over last year I have noticed that I feel like electrical currents are running through my body.It iliterally feels like pulsating elertrical currents.mainly in my arms.
  • When I first was diagnosed with fibro I went to Hasting's found a book copyright was 1999 I am sure there is something more updated now but the name of it is The Fibromyalgia Advocate.It was and is definitely worth the money and the read and you will use it over and over again! Everything you need to know from A -Z One of the quotes from the book is a description of feeling fine for us fibro sufferers. Frustrated Individual Nothing works Everything hurts.Hope this helps someone out there.It is not what is going on outside but what is happening inside.; (
  • @Terry Yes it is wrong. No one really knows until they experience it first hand.It is definitely for real what is going on with our bodies.
  • Besides Fibromyalgia I also have been diagnosed with Ehlers -Danlos syndrome better know as loose joint syndrome or hypermobile syndrome. Does any one have this problem? Maybe we could talk?
  • Very strange....I don't know how I got here but here I am. It has been good to read some of the stories here. I haven't been on a fibro site for a long time. I might be the oldest at 70 and have had it for 25 yrs. I've gotten used to not doing much of anything when I used to be chief caretaker of husband 5 kids(3 girls, 2 boys)2 refugee teen boys, then grandkids while being involved with other things. We still have our 2 youngest a few days a week....10 and 12. I'm so tired of being tired. A rare going out to lunch with a friend is all I can do for one day. Nothing about me looks sick so when I say no to things I feel guilty. I'm sure you all feel the same. Every day is difficult in some way or another. I was also diagnosed with diabetes 2 years ago. I'm a little overweight and don't exercise. I'm very lucky to have a husband who understands and helps....he's retired and has Parkinson's tho his meds are pretty much keeping it in check. He does the hard work around the house . We joke about taking our meds on time. I've got him beat as to the amount...Cymbalta, 2 for blood pressure, hydrocodone/Tylenol for pain, Nuerontin for Nueropathy in hands as well as a pres cream for itching on ankles and feet, Metformin for diabetes, Lipitor for cholesterol requiredby Ins tho I take the smallest amount, Dexilant for Gerd, Xanax for anxiety if needed and 1/2 Ambien for sleep. Also, a special approval for 1/2 Nuvigill for excess sleepiness during the day and if it's going to be a busy day. Our youngest daughter hates that I take meds at all. Our kids are sympathetic but it doesn't stop them from asking us to kid or dog sit. We have a great grandson I'd love to take care of....he's so cute....7 mo now. Our oldest daughter died of cancer in 2006 and we moved to be near them before and after. The dad and 3 girls moved back here and are doing remarkably well....all teens as of Oct.
    That's all for now....have to get to bed....oldest son and his oldest son are coming tomorrow for golf with my hubby. It's so good for him. I fear the advancement of Parkinson's symptoms. Son is expecting 1st bio-grandson any day from 2nd son. He has 2 grand daughters from step daughter. The family moves on no matter what. Bye, M.A.
  • Different condition, different outcome. Syncope for 35 yrs until I took Gabapentin for headaches, the seizures disappeared, I still have headaches but the chiropractor helps. There were many different and strange symptoms related to the mostly near-syncopal episodes. A more holistic view of many different maladies is what is needed as my individual story can now be seen as going back to the drawing board. Every last story like mine is a breakthrough as it forces medical science to redefine and add to what they currently understand about all conditions. Don't lose hope, help is on the way.

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