New to the community: Hi, I was diagnosed... - My Fibro Community

My Fibro Community

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m4n1x profile image
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Hi, I was diagnosed with Fibromyalgia officially yesterday although I have really been hurting for over a year now. I am feeling pretty low and it is taking awhile to sink in that I may not just recover with a bit of rest. Does anyone have any advice etc?

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m4n1x profile image
m4n1x
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syltownsend profile image
syltownsend

Hi, I was hoping someone else would have replied by now, sorry you've had to wait so long for this but I've been dealing with some "stuff" myself.

I was diagnosed with fibro about a year ago, though I've had most of the symptoms for decades. I understand the feeling and hope you will try to stay positive about it: You've been feeling bad for over a year, and now you know why. It's always better to know than not know. Because now you have an idea what to expect, how to choose the best treatments and doctors, what to avoid, and, the good news: Fibro isn't fatal. There are many kinds of treatments, and individual reactions vary a great deal--as does the disease itself. One of my friends says her doctor expects fibro to be divided into as many as 8 different diseases in the future.

Here are some things that have helped me: A combination of Lyrica (pregabalin) and Cymbalta (duloxetine) helps a lot with the aches and pains. Neither drug by itself helps much for me. On rare occasions when I am in a flare and need pain relief to be able to rest and sleep, I will take 2 Aleve (naproxyn OTC), or even less often, 1 or 2 oxycodone. I prefer to avoid both of those because of potential for serious side effects.

Non-drug things that help me: Moderate exercise. Lots of people with fibro or other types of chronic pain believe they can't exercise because of the pain. But you don't have to start (and probably shouldn't) with walking 3 miles or spending an hour in the gym. Almost anyone could do say, 5 minutes of stretching in bed. Working with physical therapists and occupational therapists has been a big help for me, first for helping me learn what I can do without making the pain worse, or injuring myself. Second, helping get in the habit of doing some exercises on a regular basis. Third, giving me encouragement and the feeling that someone who understands my challenges is there for me and cheering me on! I've had pt and ot a number of times in my life because of joint deformities and OA, and after orthopedic surgeries (3 joint replacements among other things). So I knew how much of a difference exercise can make, and how my body responds to my efforts. Of course I've continued the pt/ot exercises on my own at home, and have also joined Silver Sneakers classes at the YMCA. I also walk for exercise, climb stairs, and use stationary bikes, starting with recumbent bike and working up gradually until now I can do 45 minute workouts on the regular (upright) stationary bike. Just have to be careful and increase the challenge slowly so I don't get a setback.

Moderate exercise is recommended for fibro by many doctors. Personally I can't recommend it enough--"Exercise is medicine," as one doctor put it. It not only helps with the aches and soreness, it also can help reduce depression and sleep disturbances, which often accompany fibro.

There is also evidence that a type of psychotherapy called CBT (cognitive behavioral therapy) helps many people with chronic pain as well as other symptoms of fibro. Not to say it's all in your head, or that you are imagining or exaggerating it, not at all! What it does is help you "reframe" how you think about your symptoms. Makes sense when you think about it, because pain is felt in the body but perceived in the brain. And how we think about something, how we feel emotionally about it, really affects all those feel-good brain chemicals, neurotransmitters and hormones, that can in turn affect pain perception. I have not done CBT specifically for fibro or pain, nor have I done it with a professional, though I'm sure much of my psychotherapy (for divorce, ptsd) has been grounded in CBT. I was first introduced to it because I was going through a difficult divorce and, having always been an avid reader, got some books and then some audio tapes on how to do the exercises on my own. It has really helped me with all kinds of problems in my life.

I also have done a weight loss program that uses hypnosis. The same company also has a chronic pain program, and they let me do some of those sessions, too, because pain was making it difficult to exercise adequately. I believe that has helped too, it is really another way of "reframing" and learning to stay positive and open to possibilities, and deal with frustration, stress, depression and anxiety. I've lost 30 pounds too!

I also find that if I do something I really enjoy, the pain as well as fatigue are less noticeable. Again, the good brain chemicals. There is also research showing that a distracted brain is less sensitive to pain.

Paying attention to what triggers a flare also helps. For me it is mainly two things that are mostly within my control: getting enough sleep, and being careful not to "overdo it" on a good day. And one thing that is not: the weather. I've always noticed that a falling barometer makes OA pain worse, and recently confirmed this for fibro pain too. Though I can't control it, what I CAN do is watch the forecast so I have an idea what to expect and be prepared to some extent.

Support groups help, too, just help with reminding me that I'm not alone and that others with the same problems care about me. I go to one local support group and besides this one, I am in 2 on Facebook.

Good luck, try to stay positive and I hope some of these suggestions help you find your best treatment strategies.

Bostonterrier profile image
Bostonterrier

Hello! I'm sorry to hear about your diagnosis I too have fibromyalgia you really need to take one day at a time because everyday you may feel differently. Try to get on meds and a fibro group they are people who are all suffering with the same thing maybe they can give you some good ideas. Sleep and try to stay stress free if possible! Well good luck let me know how things go for you

Wavelength profile image
Wavelength

I really understand how you feel, I too have been recently diagnosed and I've felt I'm going through a grieving process of the loss of "me" and trying to come to terms and accept that life is not the same with the new fibro me. It's so daunting and despite I've been feeling unwell for about a year I'm still in shock of the diagnosis and learning that there is no cure. Where I live there is very little help, no support groups and a waiting list beyond belief to get treatments. It's very isolating, friends don't recognise me as being the "me" I used to be and I find myself saying no to a lot of social activities because I just don't know how much pain I'm going t have that day. This is definitely life changing. Let's just hang in there, there's got to be a rainbow.

Wavelength

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