Pleased to meet you!

[Estroyer]

After some searching and not finding any real active online forums in my own country, (Netherlands) I decided to try and find some support on a foreign forum. Pleased to meet you!

I've had my diagnoses at the end of last year. It started out with some pain in one of my hips. After a few months I got more and more complaints and then it got so bad I wasn't able to walk anymore. At first the dr. thought it was bursitis, so all treatment was focused on that. But after my complaints got worse his wife (who is also a dr.) did a recheck and found that the pain came from the muscles and other tissue.
She was the first who carefully touched the subject of fibromyalgia and after some hospital visits and conversations with my doctors, I learned that indeed I have fibromyalgia. I got amitriptyline and Lyrica subscribed and for the first in a long time I was able to walk short distances with my husband and daughter again!
In the last weeks I suddenly had flareups for the first time and I got my medication doubled and the worst of the pain is gone again.

There are a few things that I found really remarkable. One is that I can't feel cold as cold any more, but instead I experience it as pain. After some horrifying experiences as such where I got wet and cold by rain (hey, it's the Netherlands, what did you expect ) I cried like a kid, the pain was unbearable. I shun to go outside much now, or not until I am certain it won't get too cold. Luckily we are heading for summer!
Another thing that happened, is that before my pain started, now 2 years ago, I had very odd sensations in my right leg. It felt as if someone would pour cold water over it. When I would touch my leg, the feeling went away. It happened for a few weeks and I asked my dr. about it and today I asked my neurologist about it as well, but they seem to think it is of no significance. And now I just feel silly for mentioning it at all because I feel that some people think it's between my ears.

I also started mindfulness and will start fysiotherapy next week, but I only get 9 visits because fibromyalgia isn't really recognized yet by law (but it is by rheumatologists, we are already trying to collect enough autographes to get it passed by law).

Furthermore, I gained lots of weight because moving and walking isn't always an option, although I do try. One time I had to sit on the floor in the grocery store. It felt so degrading, but I just buckled from pain so now I feel my world is getting smaller and smaller.
I hope my fysiotherapist can help teach me some ways to be more mobile. My sleep is also disturbed, but I learned that is also part of the fibromyalgia.

Thanks for hearing me out, sometimes I am scared of the future, especially of the pain. I hope it will lay quiet! Greetings from the Netherlands

 

[remnant]

I receive my share of your greetings. It is frustrating that you did not find a platform for fibromyalgia in Netherlands. It is also heartening that you came here. Its cold over there especially in winter and this can cause shortening of muscles which is the primary cause of muscle pain. What about these time tested tips to diminish your fear for winter? For example, a hot bath at night to warm your bones and wearing warm loose clothing. Woollen pyjamas, sheets and pillow cases are as effective as medications but without side effects.

 

[diamond]

Welcome Estrover.....glad you have found us on here.

Fibromyalgia does presemnt with so many symptoms not just pain and fatigue. Feeling cold as pain...numbness tingling strange sensations through out the body are all par for the course.

Its very hard to get your head around especially when its all new. I think doctors are aware that basically we are over sensitive to all stimulii and i have had the same reaction from my doctor when new things come along. Creases in my hands for example feel like cuts and sometimes the pain in the tips of my fingers is as if you have a thorns stuck in them.

These smaller things don't compare with the daily debilitating pain but when they first happen your heart sinks thinking not something else.!

There is lots of information on this forum and you can ask absolutely anything or off load any time.

There are also some good books,,,my personal favourite is the first year with fibromyalgoa by claudia marek....packed with all aspects of fibro ....coping skills , medications from prescription to natural with all side affects...diet help and how to explain and deal with family and friends...exercise....and more.

I hope you find being here helpful and know you are not alone with this horrid illness.

Remnant you clearly have no idea about fibromyalgia...warm sheets and warm pyjamas are not as effective as medication unless you just have some mild discomfort....what about when you are rolling around doubled up with pain? Sorry i know you mean well but i think you have read to many texts books and most likely have no experience.

 

[oportosanto]

I agree that it's the case. When we are in pain only medication can provide some relief.

 

[DK_engineer]

Hello Estroyer, welcome, we are glad to meet you!

I'm really glad your medications are helping. Something that helps me is to keep a written log of my symptoms. Sometimes I notice patterns and can identify things that make my pain worse or better. There's a lot to learn about fibromyalgia, willow's suggestion to read a book about it is a good idea.

I don't experience cold as pain like you do, but I do get some weird effects.

Sometimes I feel sudden shocks of pain in random parts of my body, like electric shocks. Sometimes instead of pain it's a shock of itchiness. Once I felt a shock run down my leg to my foot. It turned into pain across the outside of my toes, then it turned into itchiness, then it was gone. Very strange!

Getting good quality sleep is important to reduce fibromyalgia symptoms. My doctor gave me Trazodone to help me sleep. If you ask your doctor might have something to help you.

We're glad you are here - please feel free to join in

 

[DK_engineer]

One more thing I forgot to mention (I blame fibro fog ) is that swimming in a heated pool can do wonders for fibromyalgia pain for some people. If you have access to a pool you might try it; even if you can't swim laps, just walking around in the water can help you feel better.

 

[oportosanto]

Those tips are important. What about a heated salt water pool? That can make a difference too.

 

[FenWoFon]

I agree that it's the case. When we are in pain only medication can provide some relief.

How ever medication is not always going to be enough, self preparation is required as well, remember that... it is also about willingness.

 

[oportosanto]

Sure, I agree with that, we need to be positive, but sometimes that is hard due to what we are feeling.

 

[sureimsore]

Hi Estroyer,

I'm new here too, but I just wanted to say hi and say don't feel bad about the weight gain. I've put on weight too; part maybe my metabolism is slowing down, but part is that I never adjusted my caloric needs since developing fibro. I eat the same way as I did when I was active. Truth be known, there have been times I have been depressed and just stuffed my face, but I'm working on that : )

I agree with DK, I keep a log of the supplements I am trying, the foods I eat and how I feel afterwards. Also degrees of pain, etc. You never know when you might need it too for your doctor(s), sometimes it gives them insight as well.

 

[Trellum]

Hoi! Hoe gaat her met u? I'm also living (well almost) in the Netherlands. I live in the ''nord-holland'' , but right now I'm in Mexico. Glad you decided to join us Welcome to the forum, and sorry to hear about your diagnoses, but at least now you have a name for the issues you have been experiencing. It sounds like you found really good doctors who worry about doing their job right. Let me tell you this forum is great, I've found so much useful information on here that I am sure I couldn't have found it anywhere else!