Newbie

[Sonrisa89]

Hi! I'm a new member. After much searching I decided on this forum for my information, compassion, help, and just to ask and vent about my fibromyalsia. I was diagnosed with FM and RP (raynauds phenomenon ) 7 years ago. I have been expierencing excruciating pain for the last year. Neck,shoulder,cramping,spasming, aches,migraines,soreness, and severe fatigue. I'm sure there are more areas affected, but those are the ones that come to mind at the moment. I am happy to be on here and I'm sorry to have to meet under these circumstances. But I am truly grateful for information from others like me. It saddens me that I am not alone in this disorder. I don't wish this on anyone.

 

[srhalex]

Hi, welcome. I'm new too
You are not alone. The pain and the fatigue are the hardest parts for me. Migraines.... oof, I hear you. I'm in a bad year myself and I keep reminding myself that I've been worse and I've been better, all since having fibro.... and that I need to hold on and ride the wave until I can get into a better place again. I know it's not that simple, especially when trying to make decisions of what to do to help get to a good place again. For me, it seems kind of random... I try to focus on bad patches not being my fault... that they happened even though I was taking the best care of my body. (When I have an especially bad day, I sometimes get asked by others, "did you do too much yesterday?"... and that question carries with it all sorts of unintentional blame that I'm not into). Do you have an electric blanket? That helps me sleep because my feet get so icy cold with my raynauds. I'm still piecing things together....having had chronic pain and fibro for many many years but not getting a fibro diagnosis until recently. I started going to massage recently and that has helped unclench my body a little..... full on therapeutic massage was too hard on my body and added more problems, but we've settled on simple relaxation massage that has helped. I've found hobbies I can do from bed which has helped so much, and distraction is my number one coping tool (hello tv!). I'm so sorry that you hurt so bad.

 

[diamond]

Hi Sarah ...may i just ask do you have to stay in bed most of the time or is it just parts of some days.

Is it like me because with hot water bottles pillows and on a matress etc you can get just a bit more comfortable than sitting in a chair.

Hi Sonrise...welcome to the forum. Please feel free to share your story and vent when you need to. We all really do understand your pain and fatigue.

 

[srhalex]

Hi Willow
Yes, I'm in bed most of the time these days. 2 years ago it was my constant migraine that put me in bed a lot (which I still have, but has lessened a lot and I've learned to live with it better), this year it has been my fatigue keeping me there. This month it has been especially bad with both fatigue and worse back pain (plus all the regular aches and pains of course). I find ice and heat really help with my back and yes, the bed is SO much more comfortable than anywhere else in my house (we got a new bed 2 years ago and it was the best money I've ever spent!) It is so isolating being stuck in bed all the time, I miss leaving the house to go do something for ME (a date with my husband, shopping somewhere, a coffee with a friend etc.) I go to a few appointments every week -when I can make it (acupuncture, chiro, massage etc.), and an occasional family thing, but besides that I don't really get to leave the house. I'd love to go out and have a good time, but I'm just too tired. I'm too tired to psych myself up for an outing, but I also reach my fatigue limit too fast to hang out anywhere long enough to have fun. A lot of days lately, just standing makes me huff and puff. We have a 2 story house and going downstairs to get something feels like an epic journey some days......so my bedroom is my home base. But I find something fun to do most days. My husband is such a good sport, he usually stays home with me each night and we are always binge watching some show or another in bed together. Funny TV helps us laugh together and have lighthearted moments in an otherwise heavy time. My husband is very funny and is a real feeler, he just oozes compassion....and I feel so thankful because it helps brighten everything......although it is FAR from the life either of us wanted together. How much time do you spend in bed?

Sonrisa89,
What is your fatigue like? I have several different stages of fatigue. I'm learning my 'alarm bells' that tell me when I need to stop. I don't know how closely they correspond with other people's, but these are the levels of my fatigue.
1. The first one is just feeling like a need to sit down. (although, that is my constant these days)
2. Then when I hit my limit, my head starts feeling like it's caving in, my face goes a little slack, body gets weak, and my breathing changes.
3. If I push past level 2, my adrenaline kicks in and I reach a stage where I feel 'buzzy' and 'wired' but otherwise pretty good for a while. But then when I stop to rest, it's too late. I'm 'tired and wired' and can't get my body to relax for like 4+hours. It's like I've drank 15 cups of coffee and I'm so exhausted my eyes are burning and I can't keep them open, but I can't slow down my body to rest either. It is miserable and I would never go there on purpose. Actually I try to not ever get to level 2 either, I don't ever push myself on purpose. But I can go from just fine, to level 3 so fast that my head spins (and the more people or 'chatting' involved in an outing, the faster I fade). I can't go someplace and get back fast enough to ever really be okay these days. So I stay home. I really do think that my huge dip this year isn't going to be forever and that I will gain more ground again. That it is a 'down' in a constant up & down cycle. I just wish I knew how long this stage would last..... wouldn't we all love to know, right?

 

[diamond]

Hi Sarah,,gosh you sound a lot like how i have become lately...its not just pain or weakness i genuinely feel very unwell everyday. I too have problems regulating adrenaline and once its kicked in for all sorts of reasons...stress or just talking being around people or even just eating can all fire mine off.

Then it has a mind of its own and i am wired and supercharged for hours or days cant sleep then pain then weakness so that like you say getting down stairs is like a huge feat.

My breathing changes my body goes heavy my left hand starts to sweat my diaphram goes tight and i start to feel like i am going to be sick get dizzy and cant concentrate like everything is just going on around me. Then the pain goes nuts burning stabbing.

I know this wonky brain/body response is because i have been continually subjected to stressful situations.

You are lucky to have a great husband who snuggles up with you to make the most of what you have. I admire your positive attitude too.

I hate being in bed but sometimes i have no choice. All i want is to be up and out or busy even if its just doing housework or gardening bit by bit.

 

[srhalex]

Willow,
It's a rough road we're on, isn't it?
I don't think I have any responses after I eat, but I will have to pay closer attention.
I get what you mean about wanting to get out of bed and do simple things that make us feel normal. I never would have thought that I would miss housework