Old 03-09-2016, 02:26 PM #1 (permalink)
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Default Rheumatologist Friday

the primary care refered me to a rheumatologist, that appointment is friday. said she didnt want to tag me with fibromyalgia but felt confident that is what i am dealing with. all of the typical symptoms, a gazillion tests, co-pays, and all of the usual attempts to figure out what is wrong with me have been completed.

the length of time i have been riding on the struggle bus is partially my fault, I began experiencing symptoms over 10 years ago, it has just taken me a long time to be willing to put the pieces together. i think that i am in a denial/anger phase and for a host of reasons...first and foremost my mom has fibro and 20+ years into it is now heavily addicted to narcotics. not making a judgement about her pain, treatment plan or anything other than how the addiction has impacted me and my kiddos. i honestly feel a tremendous amout of saddness for her and the path she is on. i have watched her isolate herself, refuse help, go against sound medical advice and spiral out of control.

it is very difficult to have a healthy relationship when narcotics are in control. i speak to this both personally and professionally, i owned and operated a pharmacy for years so i know first hand that addiction knows no boundries. have seen women dripping in diamonds step from a benz to come sit on a plastic bench next to someone who looks like they probably spent the night on the street. I have listened patiently to people explain how their meds fell down the drain and they have to get more before a trip out of town for a funeral...just like 3 other patients before them...addiction is a real thing, and can happen to anyone, especially people dealing with very real chronic pain, i truly get it. i think i have been so afraid to venture down this path that i have delayed getting any help at all.

i also delayed because i dont want to hear that i have something for which there is no cure and no solid plan to wellness. i do not want to hear him say, "you have fibromyablia". i do not want to hear that because i know that means the pain and fatigue will never really go away. in the last 8 months, the symptoms have reached a level that i can no longer tolerate, ignore or brush aside. i can no longer excercise, it takes me 3+ hours to get ready for work. i struggle to stay awake during the day, doze at my desk and am in almost constant pain. the primary care started me on 30 mg of cymbalta 3 weeks ago, aside from nausea i cant tell i am taking anything. the 4mg of tizanidine before bed makes me sleepy but doesnt help me sleep through the pain.

i have also delayed admittedly because of the stigma associated with fibro. regardless of if the stigma is valid, it does exist and is also a component of the illness/syndrone/disorder that has to be fought against. its hard enough to get my head around the realities of the physical and emotional aspects of this uphill fibro climb; i dont have the time or energy to combat the mentality of people saying that fibro is in my head, that i just need a little pill for depression, more supportive shoes, a better mattress, a new pillow, to get a make-over and new hairstyle or the host of other suggestions that have been made in the last 8 months.

i am hoping that someone here has experienced real releif from something or a combination of somethings. any suggestions and advice are appreciated.
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Old 03-10-2016, 06:39 PM #2 (permalink)
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Default Re: Rheumatologist Friday

I'm so sorry to hear about your struggles. I'm also sorry to hear the path your mother has headed down. It doesn't have to be like that so throw out what you've witnessed and start your own journey. Recognize everyone is different and although there are a lot of people addicted to narcotics, not everyone who uses them is, nor do they all abuse them.

I call this a journey because it is yours to take. Your life with fibro is what you make of it. How much you deny, fight, get angry or let it consume you in a negative way is your choice. Recognize that while it truly sucks, life doesn't have to end with fibro.

I have had fibro for a very long time. I worked as a manager full-time, played softball and volleyball recreationally for years, raised a now 27 year old and am working on raising my 14 year old. At 49 I had a heart attack, I believe due to stress and not listening to my body. I'm 5'7" and weighed about 147 at the time. After that, I made some significant changes. I started going to my counselor (hubby and I have used her off and on for over 20 years). She told me that it was time to let go, time to quit needing to take care of everyone, and time to start thinking about not working. At the time I could not see how we could afford me not working. I was the major breadwinner, we had a motorhome and quads and took off every month or so for long weekends, we had a house, a new horse we rescued, a daughter with interests, blah, blah, blah.

I talked with my boss about working part-time for a while. She was supportive of it because she knew how hard I worked and how much I was losing ground. So I did, but still couldn't consistently work. I was feeling like a failure at home and at work. My then 25 year old son blew up at me and called me a lazy, crazy, you name it, mother. I had raised him to be respectful. I volunteered at his school, supported every endeavor he wanted or was interested in. I was by all standards, a pretty good mom, but I felt like a failure. I was so heartbroken and emotional. My world was crashing in around me and I was helpless to fix it, so I kept going to my counselor.

I was eventually put on a month's medical leave by one of my specialists. My primary care physician wrote the letter. It became very clear to me that I was never going back. I was almost eligible to retire (at a greatly reduced %, but at least if I hit 30 years, I could officially retire!). I started looking into disability (if you get to that point, look at the thread I posted two nights ago on how I successfully was approved). I started working the numbers and applied.

My husband became my rock.

I started looking at life differently. Started letting go of things I struggled to do and friends/acquaintances that were not supportive of the direction I was going. My counselor said I needed to let go of who I was and embrace who I truly am today. My journey started in October 2013 with my heart attack, but it hasn't ended. I have heeded the words of my counselor and have let go of who I was. I'm proud of my past. I was a model manager with high performing teams. I was voted "Allstar" by my softball teammates on more than one occasion. I was, and am still working to be, the best mom I can. I have learned to love me......with all of my ailments (pained, fatigued, anxietied, depressed, insomniaed, neuraupathied, extreme feet pained, headached, migrained, colitis, IBS, degenerative disc, bone spurred, arthritis ridden me)

I no longer work. Financially? We are doing fine! We do things and go places. We work around my abilities. I have no idea how we're fine and I've stopped questioning it. My son is starting to come around (Yes, 2 years now). My husband is amazing. My happy go lucky daughter is starting to become a stinker teenager. Most days I am happy, some days I bawl my eyes out then regroup.

I am prescribed hydrocodone. I have been prescribed it for, gosh, years now. I have never felt like I HAVE to have it. I get 60 pills a month. On the good months, I put the extra in a separate area to keep for when I know I'll need them, like have a particularly long pain flareup or we travel or go to the dunes and I want to play with my quad, or I want to accomplish some serious work around the house. Last year we went to Alaska for two weeks during Petersburg's Mayfest. I did way too much walking. I took my fair share of pain meds. September and October were pretty good months, I didn't use hardly any. The last two months? I have gone through what is prescribed and still have more pain than is preferred, but I'm okay with that. I can lay around right now and not do much.

Sorry, it was a very long-winded way of saying....Start our journey. If you get to where you can no longer be who you were, mourn the loss of that person and start working toward embracing the new you. Life is truly what you make of it. I don't go a day without pain and rarely a week without severe fatigue, but I have never been happier in my life.....Gentle hugs Wedel...
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Old 03-11-2016, 05:48 PM #3 (permalink)
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Default Re: Rheumatologist Friday

Wedel how was your apt? I wish I had Sean this sooner. I'm sorry about your moms struggle with addiction but you must remember that is her struggle not yours. My son is an addict. I don't have any pain meds because he will just steel them soooo. You can manage with out pain meds if you choose. (It's not an easy choice). Just because there is no cure today does not mean there won't be a cure tomorrow! My mother died in 1973 of breast cancer, there was no treatment at her stage, just measures to keep her comfortable, today she would most likely survive. My sister did! : ) hang tight, you are already ahead of most of us in that you are familiar with this disease.
I do get the try to avoid a diagnosis you don't want to hear. I tried that, turned out the lump was a fibroid! But I'm sure I'd do it again.
Hope you return and let us know how it went.
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Old 03-11-2016, 08:06 PM #4 (permalink)
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Default Re: Rheumatologist Friday

I'm home from a day of appointments, in my pajamas with the first dose of tramadol down the hatch. He was truly a blessing, I spent over 3 hours in his office. He went over 6 years of medical records and notes with me along with a list and explanation of symptoms I had typed out with my husband's help. They took x-rays there and he pushed and poked and prodded. Very kindly he said you have fibromyalgia and probably have for many years. You are batteling against something that the medical community doesnt really understand and to some degree are suffering needlessly. I cannot make you pain free and I cannot cure this but together we can make your life better. So now I'm kinda smitten with a little elderly man with a heavy Indian accent he said tramadol when I walk in the door from work & one before bed. Meloxicam and Cymbalta in the morning. Restorative yoga for 20 minutes a day and warm baths with Epsom salts each night. To promise to try this for 3 weeks then come back and we will reevaluate together.

I went for the mammogram, then they sent me in to have ultrasounds on both breast. Painful cysts on both sides and a palpable lump in one, 6cm. That one they want to biopsy. My 6' 2" 265# husband looked like a scared kid sitting in that waiting room, he hugged me and wouldn't let go. I was reminded that I deliberately chose a drastically different lifestyle from what I grew up with when I married him. I decided to apply that to the fibromyalgia diagnosis as well.

Thank you for your kind words and encouragement, I'm sure I will have many more questions along the way. Glad to have found this place.
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Old 03-14-2016, 12:07 AM #5 (permalink)
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Default Re: Rheumatologist Friday

Sooo glad you found a compassionate and caring physician! That is huge in reducing the stress and anxiety. I will be looking forward to how his suggested treatment works out.

As for the mammogram results. Ugh! Scary! I have mine tomorrow. I pray that the biopsy is benign. Your hubby sounds as compassionate and affectionate as mine. We are lucky for sure. Hang in there and keep us posted with the results....

This forum is a wonderful place for so many reasons.....Take care Wedel....
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Old 03-14-2016, 09:56 AM #6 (permalink)
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Default Re: Rheumatologist Friday

Wow, you ARE brave. All of that in one day! I put my Mano off because I just didn't think I could handle the squeezing (or a lump). I'm so happy you found a great doctor. You must feel some relief just confronting your fears.
Your sharing your husbands response nearly made me cry! On your bad days remember him and how that felt and hold on if nothing else to feel that again.
Please read up on cymbalta, there are even some postings on this sight about it. My doc. Prescribed it and after very little research I ditched the idea. But you must form your own ideas and medical plan.
Again...so happy for your successful day
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Old 03-15-2016, 07:48 AM #7 (permalink)
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Default Re: Rheumatologist Friday

I sympathise with the fact that your mum is addicted to narcotics. This is the case with countless individuals who have been diagnosed with various conditions that induce chronic pain like cancer and fibromyalgia as well as CFS. Some patients are introduced and report to drug abuse as a mechanism to ameliorate their debilitating pain before they are diagnosed with fibromyalgia and a treatment plan developed. This exposes them to further addiction and drug interactions when they start on a chemotherapy course with such drugs as Cymbalta. You should come to terms with your condition since acceptance is the first step on the highway to recovery. To this end, FB is usually aggravated by stress. Joining groups or causes associated with fibromyalgia will put you on the right course to cater for your physical and emotional needs.
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Old 03-21-2016, 07:58 AM #8 (permalink)
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Default Re: Rheumatologist Friday

I ditched the cymbalta on Saturday, have been on it for a month without marked improvement. decided that "maybe its helping a little bit" just didnt oughtweigh the sideeffects that were already beginning and the countless negative reports I have read recently. No judgement on those for whom it helps, just decided it was a too risky path for me. Should have dont that research prior to beginning the treatment but when you are sitting in the doctor's office in severe pain and they give you a script and call it a "fibromyalgia medication" sometimes a desperate girl will fill it and start popping them into her mouth. KILLER migraine last night, came on within minutes with no warning, 100mg of tramadol, 2 excedrine and 2 advilpm didnt touch it for over an hour. Not sure if this is related to nixing the cymbalta or if I was just due a migraine as they are a pretty regular occurance for me. Hoping for the latter.

Was off work last week due to flooding in our parts of Texas. Our house was spared so I am very thankful for that. So many around us lost everything. I did notice that being able to rest as needed, sleep when possible and just move slower in general made a difference in how I felt physically. It wasnt a magical cure, I still feel like my legs are being pulled out of my hip sockets and my neck and shoulders are on fire but it was easier to combat when I wasnt thinking about a finance meeting, processing credit card vouchers and all of the typical work stuff too....so I'm planning on winning the lottery this week & turning in my resignation next.

After my mammogram was officially marked "contains highly suspicious abnormalities" i had the ultrasound. They gave it a thumbs down too. Biopsy is tomorrow. Had to tell my daddy last night as I wasnt willing to risk the wrath of him finding out after the fact. Broke his heart and mine to hear his voice get wobbly.

Onward, one foot (slowly) in foot of the other!
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Old 03-21-2016, 10:25 AM #9 (permalink)
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Default Re: Rheumatologist Friday

That's the spirit right there @wedel, even facing big difficulties we need to be optimistic because if we lose that everything will be a lot harder. So, best of luck and I am sure you'll keep the capacity to find the good things in your life.
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Old 03-22-2016, 12:14 AM #10 (permalink)
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Default Re: Rheumatologist Friday

Glad you were able to get a little unplanned rest! I find it doesn't solve the problem, but sure takes the stress away when you are down and don't "have" to work....

So scary to get your mammogram results back with highly suspicious abnormalities. Continue to stay positive and I'll pray everything comes out okay....Keep us posted..
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Old 03-22-2016, 07:01 AM #11 (permalink)
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Default Re: Rheumatologist Friday

Indeed, we need to keep optimistic. Even in a worse case scenario everything can turn out ok, like the recent case of a friend of mine that just at 36 had breast cancer, but she beat it and lives a normal life now.
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Old 03-24-2016, 11:24 AM #12 (permalink)
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Default Re: Rheumatologist Friday

@wedel I'm sorry to hear all that you're going through. I'm glad your house was spared from the flooding. You certainly wouldn't have needed that on top of the rest of what you're coping with. Your situation doesn't have to be the same as your mom's, but do be careful, since addiction seems to run in families. I'm always cautious with medications, because there's a strong history of addiction in my (extended) family. Try to keep the faith with regard to the test results, and keep us posted.

I have good days and bad days. Sometimes I feel as if the pain will never end. I'll usually try to rest for a few days and take it easy when I'm experiencing a symptom flare, but if I do that for several days and the pain isn't getting better, I will push past the pain and go for a nature walk. I always feel better afterwards.
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Old 04-16-2016, 08:39 AM #13 (permalink)
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Default Re: Rheumatologist Friday

Hi wedel, we haven't heard from you in a while, and I'd like to know if everything is well with you. My mom and I had such a huge scare some years ago because her mammogram was abnormal, it was a time of so much stress. So I understand how you must be feeling. I truly hope everything is well with you, no one should have to go through such a stressing thing, ever. G-d bless!
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Old 04-18-2016, 07:55 AM #14 (permalink)
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Default Re: Rheumatologist Friday

Yeah, mammogram is something very important because the sooner some problem is spotted, the easier it is to cure it.
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