Please tell me I am not alone or help me understand

I have had Fibromyalgia for 15 years and been on disability for about 11 so I am not new to this. Like all of us, I have adjusted my life to allow for the fluctuations in how I feel day to day and sometimes hour to hour. I accept my limitations and challenge myself to work past those I can. I used to read a lot about FM but decided that there is nothing revolutionary out there and not much that definitively helps. Right now, I cannot find any help and understanding with my present situation. In March, I was hit by a car while riding my bike. Among other things, I suffered knee and neck injuries and a fractured sacrum. The sacrum (an area quite low on the spine) takes the "normals" about 6 months to heal. The problem is the accident seems to have increased all my fibro symptoms in spades - the tiredness, the headaches, the balance issues, the fibro fog, the ALL OVER aches. Its positively maddening. My rheumatologist says this may or may not ever go away. It may be a permanent reaction to the accident or it may go away when my sacrum actually heals. I am going nuts with this. Most days I cannot get out of my own way from the tiredness and the pain is overwhelming me. Forgetting everything all the time is getting quite old. I was limited in what I could do before but I at least knew what to expect but now my body is completely betraying me. The other day I actually felt decent for several hours and told all my kids to remind me of those few hours - that they actually existed - later when I no longer would feel well again. It doesn't seem I guess fair that after adjusting to the pain, the exhaustion and all the other mess of symptoms for 15 years prior to the accident that now it is all that much worse. Has anyone else lived through anything like this, another trauma? Does it go away? Is it my imagination? Is there anything that helps with this? Is there, for that matter, any new treatments on the scene that actually work? Any words of support will be so enormously helpful. Thank you.

I'm sorry you are struggling with this. I don't have any words of wisdom, just (((Hugs))). I, too, have had fibro for a number of years along with several other chronic health problems. And just when I think I've adjusted to one, another one crops up, and I feel like I'm back at square one.

I've had two back surgeries previously, and over the past year or so, I've developed sacroiliitis and spinal arthritis. While they create their own particular pain, it also seems like the fibro has been ramped up as a result. I'm still trying to figure out how to deal with the new back/hip pain and the increased fibro pain, too.

I haven't worked out any answers yet; I'm hoping that with time I will accept and adjust (again), but I will definitely commiserate with you.

Hugs - Austen

Hi, Hopeathene, and welcome!  I'm so glad you found us and joined the family!  We have wonderful members that love to help one another and, as a bonus, we really do care about each other too.  I think you will like it here.

 

Well, you are definitely not alone.  We all have pain, usually in many places.  There are some days that the only thing that doesn't hurt on me is my ear lobes!  No muscles, tendons, or ligaments in them.     But, fibro does wax and wane so I know it won't be that intense all of the time. 

 

It's a shame your doctor didn't give you much hope.  There is a lot of hope!  First of all, you had that few good hours!  It sounds like that was the first time you have felt better in a long time....and it very well could be the first of MANY better times.  So, try to focus on the good things going for you and your many blessings.  I know you do have them.  I know if I focus on how I am feeling, that sure can create a lot of misery for me.  Instead, I focus on other things.  I keep busy as best I can and give myself pats on the back when I accomplish my goals for the day. 

 

I use malic acid/magnesium supplements and also vitamin D3 to help with my pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients.  I live in Florida and was so surprised to see that I was deficient in vitamin D!  With all the sunny days, I would never have imagined that!  But I was.  So, you might ask to have your vitamin D levels checked out.  They use a blood test for that.

 

I also use ibuprofen with food and extra strength Tylenol but had to stop the ibuprofen for the time being because I did develop a bleeding ulcer.  Bummer! 

 

It is important to keep moving with fibro.  If you sit or lay a lot, you will be stiff as a board.  I do gentle stretching exercises and I also do daily gentle exercises.  I walk and/or swim as my exercise.  I also pace myself.  Everything gets done but in a different time frame.  Lastly, I have gentle massages once a month.  I wish I could afford to have them more often because they help me.  No deep massages for me!    But a combination of all of the above have helped me be in control of the pain and I've had a full and enjoyable life in spite of this lousy illness.  I've had fibro for 24 years. 

 

I know I've probably told you things you already know but I mentioned them anyway because I know I keep learning new things about this illness. 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you might pick up some more ideas there, too.  There are links about malic acid/magnesium supplements and vitamin D3 and how they work in the body.  The gentle stretching exercises are also there.  There is a good link called Doctors Respond to New York Times Article.  Doctors who have been studying fibro are responding and  you can see what they think is happening and it also shows that work is being done to figure out this illness.  It's always good to go back and refer to Fibro 101.

 

Fibro fog......you need to keep a good sense of humor about that!  I've done some really crazy things because of fibro fog.  For example, I have tried to start my car with the key to my freezer...on three different occasions!  I went to a casino a couple of months ago and, for the life of me, I couldn't figure out why the slot machine wouldn't work.  I had the gentleman next to me trying to help me.  Guess what?  I never put any money in the machine!     But, even though I was embarrassed, I had a great, healthful laugh over that...and so did the gentleman.  If you can't change your situation, you need to learn how to live with it to enjoy your life.

 

There is a great post on Fibro 101 about how to have a positive attitude.  This honestly has helped me as much as any medication could.  Things could really be a lot worse for all of us so I'm thankful for what I CAN do and don't focus on the things I can't.  I always try to do what I want to do and 90% of the time I can figure out a way around fibro to accomplish what I want to do!  I'm always amazed at how adaptable the human body and spirit can be!   I'm glad to see that you do try things, too, and challange yourself, too.  Last spring, I spread 99 bags of mulch in my gardens!!!!  I never really thought I could do it but I get so tired of asking for help from my daughter.  (I'm a widow.)  So I decided I would pace myself and just see what I could accomplish.  It took me a couple of weeks but that still gives me bragging rights!    I always challange myself, too! 

 

So, put a smile on your face and some hope in your heart!  You will get this under control.  You just need to try different things to see what will work for you.  With fibro, what works for one doesn't necessarily work for another.  It's trial and error.  Since your accident,  you probably need to adjust things to help with the additional pain you are having.  What you used to do obviously isn't working as well.  I always try a more natural approach and try to avoid medication as much as possible. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine