Fibro Sunday, a little late…

I have been wanting to see a new rheumatologist for the last several months but I continually put it off. I think part of the reason that I didn’t make the appointment was that going to a new doctor can be difficult; and secondly, I have to tell another total stranger about all the pain I have and being told oh it’s just the fibro.

I was wrong! This doctor listened to every word I said, made notes as I answered his hundreds of questions, and took his time with me.

He is thinking I have been misdiagnosed and may not have fibro, sent me for bloodwork to check for Rheumatoid Arthritis. He also had me stop the arthritis meds and put me on steroids.

WOW! He said if by the 5th day I didn’t notice anything different, any improvement, to stop taking it. Well, by the time I went to bed that first night, the blanket did NOT hurt my toes, socks did not hurt my toes. Then next day I woke up and wasn’t quite as tired and stiff as I usually am, the third day I had a little more energy.

I am not pain free, but oh what a difference!

Tomorrow is the 5th day and I am positive I will be continuing the steroid regimen. I am totally amazed.

I have tried to have so many conversations with the doctor I was seeing about RA, because I had the markers show up in a blood test 3 plus years ago but she just continually said “Fibro”.

I don’t know for sure that I actually do have RA, but so far this new doc has me on the right track.

So I guess if I have any words of wisdom tonight, I would say to always follow your gut about your health. Get a second or third opinion if you need to do so. I am not encouraging being a hypochondriac, but if you are sure what you are feeling about your body is not what the doctor is telling you, get a second opinion.

Live well and happy friends!

Fibro Sunday

One of the things that I think is a challenge for those of us that deal with fibro pain, is trying to figure out when that pain is from the fibro, or something a little more serious.

For a year I complained to my Rheumatologist about my right shoulder pain. She kept blowing it off as fibro, even though over the months it was increasingly getting much worse. It took almost a year before she actually believed me and then in a matter of months I had rotator cuff surgery.

Another concern I have had is that I continue to get arthritis in many more places on my body, so I questioned something more severe, perhaps rheumatoid arthritis. And she shrugs it off.

So, sometimes we have to take matters into our own hands because we do know our bodies better than anybody. Rheumatologists are a rarity around my area so I will be driving to a nearby town. He may tell me the same things too but I feel that I need a second opinion.

I strongly encouraged anyone with a health concern that is not completely confident in your current doctor to seek out a second opinion, and a third if need be.

Another thing that makes me seek out a second opinion is that everytime I read an article about a theory on fibro, she “pooh-pooh’s” it, tells me the theory is old or that there is no truth to it.

I have read several articles over the last 6 months about a possible link to a virus. I would love to talk with her about it, but I already know what she will say.

I hope you are all well and enjoying the spring!

Live well!

Fibro Sunday

Yesterday I spent part of the day with one of my dearest and most cherished friends. She is recovering from knee surgery, so we had a lot in common sharing our stories of pain medication, therapy, and overall physical pain.

And it made me realize that to those that do not have daily pain, chronic pain, you cannot understand how our lives have changed because of it. Or what we have to deal with.

For example, shopping. I love shopping! Especially in the spring when I get to plan and shop for my flowers, planters and garden. But it’s exhausting and painful. Getting in and out of the car can be tiresome but it can also hurt. All the walking hurts me, but I push on as much as I can. I usually have to ask for help with large bags of potting soil, fertilizer, etc. There have been days where I had to break the shopping up in two parts, coming home for a break and going back either later in the day or the next day.  Don’t even get me started on shopping for clothes, OMG!  What female doesn’t like shopping for clothes but I tell ya, getting undressed and dressed again can be a little hurtful.

Cleaning can be a challenge as well. When I hear someone say that they can get their house cleaned in a short amount of time, I kinda want to smack them! But I am also envious. I do a little cleaning and then have to sit for a short period of time. Possibly use the heating pad. But I can tell you this, having a spotless house isn’t as important as it used to be!!

Yard work, I always loved being in my yard and gardens but I have to pace myself and be careful how I move and how much work I allow myself to do at one time.  Pain meds are always involved.

Waking to an alarm and going to work, I know we all struggle with that! But seriously, when you hurt as bad as we do, getting up and moving first thing in the morning is not that easy. I have to work to support myself, so I do my best to work through the pain, or the stiffness, or the exhaustion as best I can just so I am out the door in time. And when I sit in my chair at my desk… WOW the pain sets in my back or hips like crazy. And I have to wonder, is it really worth it?

Taking a shower. Yes you read that correctly. Sometimes the water hitting our skin hurts. It can also be exhausting trying to get a shower done in a reasonable amount of time, all that moving. There have been times where I am using a back brush, it is like rubbing nails across my skin. There have been times when just shampooing my hair not only hurt but used all my energy. Most of the time the water cascading over me is very refreshing and comforting but there are times when it is not.

Weather. I know there are a lot of folks that can feel the weather changes coming with their arthritis pain. This is a little bit more! In fact, I can tell you that some days, I have sat at my desk with my head in my hands crying from the pain, willing it away, waiting for the pain med to kick in and just trying to breathe and not stress too much but the crying is a dead giveaway that I AM stressing!! I sometimes calm myself with a cup of chai while the med does its job. 🙂

Exercise. I once went to the gym, and often; at least 3-5 times a week. I am lucky if I can get myself to our fitness center and swim just once a week, I do try, and I do feel good while in the water. But trying to convince myself while I am IN pain, that I should be in the pool, well lets just say the conversation in my head is not pretty!! I try to walk too, but the pain in my feet is terrible, I have orthotics which does help but if you have never had pain in your feet you cannot understand walking like that! I am lucky to get a 30 minute casual walk in, my good walks of doing a hearty fast paced sweaty walk is over! I feel like I am giving myself heart disease by not moving, which is what both my parents passed from. I feel doomed.

Our weight, ugh. Because of everything I just told you, we then put on weight because we can’t move much and it is very depressing. And just makes us feel even more horrible about ourselves.

So when someone says they are hurting but they look fine, believe me, we do hurt and the struggle is real for us. Don’t judge us, just try to understand.

The sun is shining and it is just a tad warmer today so I am going for a walk. Then I need to run an errand and head for food for the week. You all have a great day!

Fibro Sunday

Today was absolutely gorgeous!  So hard to believe that just a little over a week ago we had snow!

But today, the temp reached 72, and I was able to get outside and plant pansies, pull weeds and sweep the walks.  And play endless ball with the pup.

Of course, yard work equals pain, even though I took several breaks.  So by late afternoon I was on the sofa trying to work my way through the pain.

I love being outside doing yard work, I just need to pace myself so that I don’t thoroughly over do it but regardless I will hurt.

I have a lot of flower beds I want to plant this spring, and typically that’s so exciting but now the back end of that excitement is knowing I will also suffer later.

Hope you all have a great weekend!  I will try to get to some new recipes soon!

Fibro Sunday, What Works For Me!

Hi there! Welcome back to my Sunday Fibro post! Today I am going to write about how I try to deal with the pain and what I try to do to survive the rough days.

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  1. One of the things that I have learned is not to fight a flare or the everyday pain. Sometimes I forget that important piece of advice and when I do, I seem to get knocked down!! So I just acknowledge that I have pain, trying to fight it takes too much energy. Trying to ignore it and hope it just goes away, is ridiculous. I try to stay relaxed and breathe, and basically just give myself a break.
  2. Try it, just take a few deep cleansing and relaxing breaths, and acknowledge the pain. If you can stay home and recover, do it. If you have a family to care for or must go to work, give yourself the time and patience to get through your day until you can rest. Slow down, and be gentle with your body.
  3. Another thing to remember is that stress can aggravate your pain. It is next to impossible to avoid stress in our busy lives but if you can learn to walk away from drama, or learn how to deal with difficult situations in your life by asking for help it can really help alleviate the stress.
  4. You know that saying “Not my monkeys, not my circus”? Keep that in mind! But if they are your monkeys, ask for help. Acknowledge that at this very moment you are having difficulty with the pain and need a little help.
  5. That being said, my next topic is to change my attitude. If I am not able to get the house cleaned or the laundry done like I had planned, I just try to realize that my body needs some rest and needs to recover before I try to do anything.
  6. Be prepared for bad days, take it easy and take care of YOU!
  7. Praying helps. If you pray and believe in a higher power, then pray. Be thankful for the good days you have, be thankful for the good days yet to come, and be thankful for your support system. If you don’t believe in prayer, then journal about your fibro journey. It will help you vent and you can also look back on the good days you’ve had and give thanks.
  8. Drink plenty of water, eat well, take a hot bath with Epsom salts, use a heating pad – just a few things to remember on days with pain. Cuddle up with a book and a pet, watch movies. Just breathe and relax and know that tomorrow is another day. I always remind myself there are others that have a much worse health condition. I might have pain that makes me curl up and cry but it could be soooo much worse!
  9. Exercise. It is so darn hard some days, heck even most days! I once went to the gym several times a week. I used the treadmill, weight machines, and some of the lighter free weights. But it became very difficult. Then I stopped. Even walking a few blocks was exhausting. But I am back to my yoga, meditation, trying to swim at least twice a week, and walking as often as I can. I don’t always want to but if all I can do is a few blocks on my walk, or a few yoga stretches and poses, I figure it’s better than doing nothing. Just be gentle with yourself and don’t push yourself beyond what you are capable of handling for the moment.

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These are just a few things that work for me. Hopefully, they will work for you. Feel free to post what works for you!

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Fibro Sunday

I have decided to… well, rather TRY something different here on my blog. I want to devote Sunday to writing about Fibromyalgia.

Sometimes, especially when I am in a flare, I need to vent. And I feel as though I may possibly be pushing my luck by complaining to family and friends.

And I figure there might be a few of you out there that are feeling the same way.

So here goes!

I was diagnosed with fibro about 5 years ago. I used to go to the gym about 4 times a week but suddenly I was finding it difficult to do any of the weight machines. And I couldn’t do the time, speed or incline on the treadmill. And I was exhausted.

I decided to give myself a break, thinking that some depression over my parent’s death was creeping into my life since I never really had the chance to grieve. Instead I had to deal with the estate.

But then the pain started. And I blamed menopause.

The pain got worse and I was convinced I had cancer. So I went to my doctor. And as I sat there and told him everything, he walked over to me, put his hand on my shoulder and just simply told me that he was sure it was fibromyalgia. He sent me to a Rheumatologist. She did a lot of tests and confirmed the diagnosis.

I was in tears.   I was always healthy and active, how the hell did this happen!!!

Then I realized I was lucky. I didn’t have it as bad as some people and I didn’t have cancer. So I moved on.

I went to physical therapy which helped get some movement back. And even though I already made sure I was eating healthy and not eating processed foods, I cracked down a little harder to make sure I was doing all that I could.

And I read. A lot! I have read so many articles on fibro, and I have tried different vitamins, different diets, and massage. Nothing has made a difference. A few times I felt that maybe something was working and I was feeling better and then BAM! I am in a flare!

That just happened too! I started taking a magnesium supplement and after several months, I noticed I was almost pain free for about 2 months. Then the pain was back and with a vengeance!!

I have also found that I have the most pain at work. In fact, sometimes I sit at my desk in so much pain that I begin to cry waiting for the pain pill to kick in. So far, I have been lucky enough that no one has walked in my office during that time!!! I also use a heating pad at my desk. It really helps, anywhere I have pain I just put the pad. The back of chair for my back, wrapped around my hip for hip pain, under my thigh for leg pain. Hey it works!!!

I have pain at home too, but its just not usually as bad.  Usually.  When I am home and have pain I can rest and recover.  At work I cannot.  Plus, I think sitting in a chair just aggravates the pain.

I do get up and stretch and move around but it is just not the same as being at home!

So, stay tuned for next Sunday and I will pick it back up with some things I have come to accept and how I deal with it all!

Live and love well!

 

 

Happy New Year!

Well, here we are at the beginning of another year. I cannot believe how quickly time is flying past me!

I am also a little disappointed in myself that I didn’t post as many blogs as I planned, or that I didn’t cook as much as I would have liked!  My days and evenings just seem to get away from me, working a full day usually gets the better of me with the fibro and arthritis that I have. Throw in some time to try to exercise and get my pup some exercise, housework and family, my life just seems to be moving too fast.

And that is something I want to work on!

But what is most important, is that every morning that I am blessed with, I just try to be a better person than I was the day before.

I guess the New Year always brings us thoughts of attempting to make our lives better with resolutions. I am sure I have mentioned before that I don’t usually make resolutions. I set GOALS.

Now I realize that many of you might want to challenge me that resolutions and goals are the same. I beg to differ!! To me a goal is what I strive to accomplish, it’s a “work in progress”. But maybe the REAL reason I choose a goal over a resolution is because of all the failed resolutions I have had in my lifetime.

That being said, I no longer beat myself up if I didn’t do what I really planned to do, yea it might disappoint me but I don’t stress over it.

I know most people want to eat healthier and exercise. But, so many of us fail with the high expectations that we place on ourselves. I have done it myself!

I always strive to live a life that is calm, hopeful, kind and loving. I think that is what most of us try to do isn’t it?

It just gets challenging with all of life’s twists and turns.

This year I am trying something a little different with my goals. I will try to begin each month focusing on one or two things that I want to improve upon. For instance, for January I will concentrate on my health and my family.

Start the month out by writing them down. Write down you plan too.  Sometimes putting our thoughts into words on paper makes it a little easier to follow.

Then at the end of the month, put out the list and see how you did.  If you didn’t quite accomplish your goals, just continue on with the list you made but see if you can tweak the plan to make it work.  Then try again.

I plan to focus on eating healthier, trying to stick to my schedule of swimming 2-3 times a week and instead of spending time watching a Hallmark movie I will read or do meditation and yoga. However I need to fit that in, I will definitely be working on a plan.

I am just not going wake up tomorrow morning and resolve to go to the gym and eliminate certain foods from my diet.  It won’t work, and I know it.

My plan for family is to hopefully get us together for Sunday dinners or a game night. Maybe after each night that I swim I can swing by and visit one of my kids for a little. Anything I can do to spend a little more time with my kids and grandkids.

My daily goal is to be more aware of my faith and spirituality. Concentrate on prayer to get me started in the morning, even if that is 10 minutes of meditation. My goal is to take the time to slow down and be thankful, hopeful, and mindful of my thoughts and my day, all day.

Give it a try, but remember you are human, you will make mistakes. You might slack now and then (who doesn’t), but when you do just recognize that you did and promise yourself that you will try again tomorrow.

Be kind to YOURSELF!!

LOVE yourself!!

Stress is not healthy.

I just want to wish you all a happy, healthy and prosperous New Year! And thank you for stopping in to see me! Live well and happy!!