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Fibromyalgia worrier

Sep 29, 2015 8:28 PM

Hi I was diagnosed with fibromyalgia in 2013 and every day has been a battle

Sep 29, 2015 10:57 PM

Same here. I'm so exhausted today, but let's try not let the diagnosis define us. We'll conquer this pain. Yaaaa...

Sep 30, 2015 12:38 AM

I have been having pain since 2010 but some doctors say it's fibro and others say it's not. But my symptoms and how I feel sounds very much like fibro. Just recently the back pain and brain fog is unbearable and I have stopped working for a couple of months. As of next week I have been going to work for 2 days. The doctors haven't given me any Pain killers which I am against anyways but I might have to take something just so I can function. I do have an appointment with a rhemotologist in a couple of weeks. What are the things you both do to manage?

Sep 30, 2015 12:38 AM

I have been having pain since 2010 but some doctors say it's fibro and others say it's not. But my symptoms and how I feel sounds very much like fibro. Just recently the back pain and brain fog is unbearable and I have stopped working for a couple of months. As of next week I have been going to work for 2 days. The doctors haven't given me any Pain killers which I am against anyways but I might have to take something just so I can function. I do have an appointment with a rhemotologist in a couple of weeks. What are the things you both do to manage?

Oct 02, 2015 5:55 AM

Hi im also going through simular situation and fibro fog have been a problem that last 2 weeks.my doctor has me on gabapentine which has not made me feel like a zombie like other medication they put me on.in saying that everyone has different affects on meds.
Not found an answer to stopping fibro fog but find baths with bath salts help with relaxation music quitly playing works for me for a little bit

Oct 02, 2015 8:10 AM

Welcome dbw3! Like many of you my pain started about 7 years ago. I wasn't officially diagnosed until 2012 with fibro (and many other issues resulting from aa 2010 surgery). I'm only using Tylenol Arthritis and Tramadol (flares or over-activity only). I was on cymbalta about 7-9 months but had to come off. It was helping the depression and pain, then I started noticing my pain was worsening as was my depression. I developed suicidal ideations and was immediately weaned in 3 weeks.

They gave me gabapentin @ 300 mg, and it made me sleep to much, but because of other issues it's now on hold. Then this year's, as my pain continued to worsen I developed a oral rash of tiny bumps and my tongue was like it has crevices; mouth, eyes & noise were so dry I was cooking on food. I had a biopsy of my inside cheek and I'm now diagnosed with Sjogrens, but also hypothyroidism. I was surprised to learn fibro, sjogrens, and hypothyroidism share many common symptoms, so when I flare up sometimes I call it a "triple whammy" (joints, muscles, bones & extreme fatigue).

The fibro fog, though still present, is actually easier to deal with note. In Jan-Feb a doctor dx me with dementia. Because of family hx of Alzheimer's, I began playing puzzle type games where I had to solve, like Bejeweled, Sudoku, Word find, crosses words, memorization games, and jigsaw puzzles. I have an awesome computer app that lets me do jigsaw puzzles from my photos, but it's not available on tablets or phones. And due to fibro fog at this moment I can't remember the name. Anyway, I recently went to Mayo for dizziness, imbalance & tremors. They tested for memory also, the same year format the other doctor gave me. I was nervous at his, but this time I knew what to expect; mainly questions reworded and asked multiple times, to see if I answered the same each time. The results were I do not have dementia, and I scored much better because I was able to remember words better. If you aren't doing puzzle type games, try it and are if it helps with your fog.

Good luck to you all and have a blessed day! 🙏🌼

Oct 07, 2015 7:55 AM

Sorry to hear of your troubles. I have fibro and was diagnosed 2013. In hindsight I've had the symptoms on and off for many more years! I was working full time as an IT Project Manager, unfortunately I've not been able to work since just before the diagnosis. It took a good year working with my GP to find the right balance of medication; I'm now on 300mg 3 times a day Gabapentin and 225mg Venlafaxine. At various times throughout the year I reduce the Gabapentin to see how my body is doing... I still need to take them as there is a marked increase in pain when I don't have them. The Venlafaxine is great for the depression, and I keep on taking it. I get regular migraines and treat them the old fashioned way, 900mg Asprin with 10-20mg Domperidone for any nausea/sickness. The quicker I take the Asprin the more effective it is.

To answer your question of how to cope... take one moment at a time and live it as fully as you can. Accept any and all help offered but don't let it make you lazy!!! I often accept help and ask if they can do it with me, as opposed to doing it for me, certainly if I can. Try not to stress yourself when you feel awful and just cannot do a thing. It is ok, and you will feel better again. Really listen to your body, it is telling you what it needs. I am now up after 3 full days in bed. I hurt, I couldn't move and the fatigue meant that I was only awake for a few hours at a time. If you suffer with insomnia, go with it! Get up, have a hot drink and something small to eat. Potter a little, and you may find that this will help you to feel able to go to sleep. Float in a swimming pool!! It's glorious and makes me feel "normal" again. The water supports the body and even gentle movements will exercise the body, helping it to keep its strength. I take someone with me who does all the driving etc so I can just enjoy the activity. Keep on top of the household paperwork, this might help you feel productive and as though you are "working". Make sure you do things you enjoy, as often as you can.

This is a time of change for you; meditation is great for pain relief, understanding and learning how to work with your body; it enables you to have time to "think of nothing", or more focused thought if you wish to work through a particular idea or issue. It takes time and practice; you may only take 5 minutes, or an hour, there is no specific time you should take. You can sit, draw, paint, walk. Meditation is not just about sitting with crossed legs and chanting "ohm". Concentrate on the things that are in your control; those are the things you can change if you need to. Worrying about things out of your control will only make you feel more ill, more depressed, feel more pain.

I take the time to be with my family; talk with my girls when they come home from school/college, something I could never do before due to work commitments. I give what I can, and smile in the face of adversity. I accept the challenge of change, see opportunities that I could never see before and go with that gut instinct... the one we've all learned to ignore... its purpose is to warn and guide us.

Don't get me wrong, I still hurt every day. I still need to go to bed every day to try and relieve the fatigue. When all is said and done, I am happier now than I have ever been. My relationships with my family are immeasurably better. I am in love with my husband again, I don't just love him. We don't know where our roads lead and instead we enjoy every step of the journey.

My thoughts are with you and I hope you find ways to move forward. If you ever need an ear, there is always one here.

Oct 07, 2015 10:10 AM

I'm still in limbo land regarding Fibro, I was unofficially diagnosed in 2007 by two doctors at the same medical clinic. I was also on Cymbalta and it was not relieving my pain. This clinic was so awful about getting medications refilled that not only was my blood pressure getting higher every visit, I was unable to get my medications refilled one month. I went 16 days cold turkey off of the Cymbalta as well as klonopin. It was hell for me. I decided it was time to change doctors. The doctor I went to, told me that fibromyalgia did not exist but was just a label that lazy American doctors have to something they couldn't understand. I told him that I did not change to him to have him treat me that way. He took me off all of my meds, within ten minutes decided I was bipolar and referred me to the county mental health facility. Anyhow I am now seeing a doctor that strongly believes Fibro is real. He claims that "most people" that have Fibro also have something called "leaky gut" which there is a urine test which can confirm this. I think it may also be called fructose malabsorption? He will be running tests on me this week and next week. Taking one moment and day at a time is the best advice. Learning to accept the things you just cannot do some days. I haven't tried meditation yet, however it is something I have wanted to try. I've heard nothing but good things about meditation. I do deep breathing exercises when I'm overwhelmed it helps me. I am also on low doses of anti depressants, Valium to help with anxiety and muscle tension. Every person has such different experiences with medications. Work with your doctor until you find the right balance of meds for you. Keeping track of your pain levels and medication side effects is very helpful. Especially with the Fibro fog. I was put on Gabapentin also weaned up to 900mg 3x per day but noticed very little relief and it was discontinued as it also made me very tired. Be gentle with yourself. It is definitely a journey with its ups and downs. Wishing you peace and answers that will help you on your journey. I love this app and when I feel up to it I'm on here. If you ever want to talk I'm here too. Blessings ✌️❤️

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