Fibromyalgia disbelief

[darkchocolate]

I haven't been diagnosed yet, but I have a referral to a rheumatologist this coming Tuesday. My referral states: possible arthritis or fibromyalgia.

I have been asked by friends and family before if it could be fibromyalgia. Every time I looked it up, I didn't think so. Mainly because I don't have extreme fatigue or the tender points. This past Tuesday was the first time a medical professional has brought up the word fibromyalgia.

Evidently the neurologist thinks it's a possibility. She is just the most recent specialist to see me.

My question is this, if you have fibromyalgia, can you get relief or temporarily feel better by changing positions?

My symptoms are both feet and ankles burn on the top and the burning sometimes goes up my shins. My legs ache and sometimes my thighs feel like I have worked out, but I haven't. My shoulders burn and my upper back aches, even after my husband or daughter gives me a message.

I was put on Lyrica 50 mg 3 times a day on Oct. 6th. Oct 13th, I wasn't feeling better so she increased it to 75 mg. three times a day. Since then I am more tired and slightly dizzy. So this afternoon I was lying down in bed. My ankles and legs were aching, along with my hips and upper back. I got up to move around and felt better.

If I sit or stand (in one spot) the same problems come back for the most part. It seems like pressure of some sort cause my problems.

I have had lots of blood work, brain MRI, cervical and lumbar MRI, and a nerve study.

At times I can't believe I might have fibromyalgia and think it has to be something else.

Any thoughts or ideas?

 

[DK_engineer]

I need to keep changing positions or the pain builds up. Even sitting in a comfortable chair can be painful after an hour or so. Sometimes when the symptoms are really bothering me it helps to take a walk. Other times I feel a profound need to rest in a quiet room, kind of like when I have a migraine.

 

[cstine]

I was diagnosed by several docs in 2011 / early 2012 and refused to believe fibro could be happening to me until 2013 when i had to give in. Like DK_engineer, i have to change positions or get up and walk around every hour... everything is a challenge... I've heard a lot of people say warm baths help. Lyrica made things worse for me.... cymbalta has been a huge help... between that and tramadol they keep me going. sending soft hugs...

 

[darkchocolate]

Thank you cstine for sharing your story. Any of the prescription drugs concern me because of the short or long term side effects.

The neurologist pointed out to me some times patients think the medicine isn't working until they go off of it and then they realize it is working more than they thought. They may not be pain free but the medicine is helping. Even though I am not pain/discomfort free right now, I do feel better.

I know since starting the Lyrica, I dream every night. At least they are not nightmares. It makes me slightly dizzy and more drowsy. The only I am not sure of is it making me have more muscle aches. They seem to be increasing in my shoulder area and neck.

 

[diamond]

Hi darkchocolate...it could be they are increasing in your shoulders and neck anyway as nothing takes all the pain away in my experience.

It is one heck of an illness to get your head around as yes it can literally change minute by minute...you can be in pain for no reason or from repetative use ie standing and walking affects legs knees feet hips or leaning against a soft chair can make your back shoulders and bottom hurt quickly or after a while depending on how your fibro is that day/hour!

Other times it doesn't do the same and you can do a bit or even a lot more and be almost pain free in parts of your body you have used.

There are times when i could rake some garden leaves in short bursts and pick them up and still come in and sit down maybe achy but not screaming pain other days i hurt too much to barely make a drink.

Stress makes it worse...if you can learn not to be scared it helps but that took me 2 years to understand my body.

Take Care

 

[Cindykay]

I Will just second the description above, and add that I usually don't have much reaction to the pressure points either.i'm on Lyrica but think it's making me worse, so I'm going to ask my dr, about Wenning myself off. There are non-prescription drug ways to ease pain which you may have tried . My favorites are Tiger Balm and Salon pas, heat - my heating pad is my best friend- and very gentle stretching. I am lucky enough to have a little hot tub which feels heavenly, and I meditate several times a day. I am on Lodine and norflex. And like your neurologist said, dint realize how much it helped til I tried to go off it. I hope you find some answers soon!

 

[darkchocolate]

willow, you are so right, fibromyalgia is a very hard thing to wrap your head around. I guess I am looking for cookie cutter symptoms. Yet the more I read everyone is so different.

I remember saying back in January and February, "there is no rhyme or reason" on how I feel day to day. Little did I know then that fibromyalgia would be a possibility.

If I am diagnosed with fibromyalgia, I can tell there will be a lot of unknowns and I will have to take it day by day.

Cindykay, I would much rather go a non-prescription route but after 9 months I was ready for the burning pain to go away. I will say that I would prefer the lowest dose that I can manage.

I have used Tiger Balm, but I always needed someone to rub it in my back and shoulders. I can manage my shoulders. I even tried essential oils and they helped with the muscular problems but nothing helped the burning sensations.

I have been doing a lot of reading and I occasionally come across people feel like dietary changes have helped them or taking vitamins. I don't eat gluten and I avoid sugar for the most part. I do eat a 85% dark chocolate bar on occasion-not all at once, I just break a piece off.

The newest change to my diet is adding fermented foods to my diet. I started doing that this summer and I really like getting my probiotics in my foods versus a supplement. I make homemade milk kefir, sauerkraut, I buy kombucha and I make a variety of fermented vegetables. I started drinking decaffeinate coffee and tea back in February. I also gave up artificial sweeteners when the chiropractor suggested it since they are neurotoxins.

I would appreciate any suggestions on taking a more natural route to healing our bodies.

 

[DK_engineer]

Hello darkchocolate, you have a very healthy diet! We've had several discussions about diet on this forum recently, and it seems everyone is a llittle different. Most people find it helpful to avoid added sugars and highly processed foods with a lot of additives. Some people see improvement by eliminating one or more of the following: gluten, dairy, meat, or nightshades. Some people have found some relief by following an anti-inflammatory Mediterranean diet.

Non dietary things that help a lot of people are a warm bath with Epsom salts, magnesium suppliments, vitamin D suppliments, meditation, yoga, doing any kind of exercise in a heated pool (this works like magic for me), light exercise, any any kind of stress reduction.

 

[darkchocolate]

Hi DK engineer! I try to have a healthy diet. I just feel better eating this way. That is the ironic thing with the people I work with. I am the one who "used" to exercise but I do eat healthy regardless of how I feel. I was eating healthy before my problems started in January. I would get up at 4:00 a.m. to work out before I got ready for work, without fail for over 14 years.

My point is they eat high carb diets, full of processed foods, fast foods and I don't. They care about me and find it ironic that their diets aren't healthy at all and I am the one with an undiagnosed health problem.

I have been taking magnesium (magnesium malate and chelated glycinate), I increased my Vit D3 in January after my levels came back at 41. The range for Vit D is 30-100 but I wanted a more optimal Vit D level. I need to try some of the other things you suggested though.

My appointment with the rheumatologist is Tuesday, and I know I probably won't know anything definitive because the neurologist said I would probably have more blood work done. If the blood work follows the usual pattern, it will be normal. I told my husband this morning I am having a hard time accepting I might have fibromyalgia because I just don't feel like it is what I have compared to others because they have such more severe symptoms. On the other hand all the tests keep coming back negative. I have to say what scares me, are my symptoms going to continue and I will end up like most everyone else with severe pain.

I am very fortunate that my girls are older and don't need me to care for them hands on, they are almost 19 and 21. My husband is great and been very supportive our entire marriage. I really feel for those who have young children or single for whatever reason and everything falls on them to get done.

 

[DK_engineer]

I'm glad they hear you have such good support from your family. My husband and kids (teenage boys) have been great too.

I have to believe that all our efforts to be healthy are not wasted. Maybe things would be worse now if you hadn't been so good about exercising and eating well for all those years. My mother is in her 70's - she tells me that the exercise she did when she was middle-aged is still having a positive impact now.

I hope your appointment goes well, take care!

 

[diamond]

Hi darkchocolate...i kind of feel the same i have always eaten healthy....used to be a good athlete and looked after my weight even after pregnancy and yet i too have succumbed to this illness!

I think it does help to stay a healthy weight and continue to eat well. You are doing all the right things.

If it is fibro and you feel you have it quite mildly then appreciate that and reduce stress in your life anyway you can. That way there us a good chance it may not progress.

My biggest tip is look after yourself and don't worry about unimportant things that crop up...you staying healthy for yourself and your family is the most important thing in the world.

I have made mistakes in that way and don't want anyone else to do the same.

 

[darkchocolate]

Thank you for all the support and words of encouragement. I won't have any news tomorrow because I cancelled my appointment and have asked for a referral to another doctor (actually either one of two doctors) that comes recommended. I will be going to a larger city, that has a much larger hospital and also happens to be a teaching hospital. I truly feel this is what is best for me.

I enjoy what I eat and know that is the best thing for my body. My friends don't understand and tease me. This entire time (9 1/2 months) they keep telling me to eat sugar, eat a McDonald's hamburger-yuck!, just splurge, but I have no desire to do that. I think once your body gets adjusted to better foods (at least for me) you lose the desire for junk and crave healthy foods.

I hope you all have a wonderful day that isn't filled with pain or discomfort.