just want an honest answer

Hi Sar,

Wow that's a lot of questions.

Well I'll try and answer all from my perspective -

1) everyone's rheumy appt different, mine was me stretching loads a few blood tests and that was it, the results showed ridiculous lack of vitamin D but no-one told me, my gp, the rheumatologist no-one, it wasn't until months later at physio they mentioned if it increased and I had no knowledge of it. Anyway I ended up having a massive dose of it, could explain the fatigue?

2) I have pain everyday, but there are days when although pain is there it's not debilitating. Fibromyalgia is different for everyone, it's what we do to manage it.

3) I'm fortunate enough not to use walking aids although there are times I had one, if it helps you shouldn't worry it's nothing to be ashamed of.

4)Getting in and out the bath is difficult especially when there are days you just want to soak your whole body, I opt for showers now especially when pain is bad on better days I have a bath using bath salts and muscle soaks.

5) sadly we do have fibro fog, memory gets a bit jumbled and hard to remember things, having a checklist is good. Just be around people who are supportive of you and what you are going through.

One of the problem is it's not a visible disability and a lot of people with fibromyalgia don't draw attention to themselves so a lot of people don't know what we are going through, don't despair there are those who don't have to see or hear it and they'll be there for you.

Big hugs

Oh the fatigue, that's a little harder for me as I'm on meds, but I've been learning to be more mindful to help relax. Yoga helps. People try warm milk, I personally can't stomach it, but also a bath before bed.

Don't use electronic devices before bed, try and not eat anything after 7/8pm. I guess a good night's kip might help with the fatigue. As I said I struggle, and I feel fatigued all the while so will be good to see what others say. Remember what didn't work for me doesn't necessarily mean it won't work for you.

Hi I’m newly diagnosed, like last week. Had to deal with tests to rule RA out . My right side hand, middle finger, knee ankle and foot swell and are in pain pretty much all the time. I have spinal stenosis and disk disease also . I use my hubby to hold onto when I walk and I also started using the tape that athelites use for muscle and joint pain. It takes the edge off the pain with out medication ( I was using that before finding out what was going on. My feet tend to fall asleep when I use the bathroom which is horrible !!! And my sleeping pattern sucks!! I’m tired but only sleep about an hour at two a night and that’s sporadic , I can’t tell you the last time I slept they the night .. I’m hesitant to go to (again) a chronic pain clinic I have done that when my back started going out,, and the RA  drs said I had gout which wasn’t true , per blood test ( as I’m typing this my right hand has fallen to sleep ) all I can do is get by day to day , some are good some aren’t. My husband is amazing, my kids tease me cause i forget a lot ,, they just don’t get it,,..the advice I can give is the tape works and listen to your body, we are all feeling different things and the same things too, if that makes sense ,, I think certain things stand out worse in different people...I wish you the best ??

Oh and I forgot to mention the rib pain!! Omg sometimes it’s unbareable ,does anyone else get that? 

Hey, My first comment is still being reviewed , by it was written 9 hours ago. I hope when it becomes available that the info helps you. Not sure why it’s taking so long to  add to this forum and your questions,,

Hi here is my opinion to your questions but bare in mind everyone is different.

1, My Rheumatology appointment was stretching, blood test and x-rays the doctor was extremely helpful and very understanding

2, pain is constant daily and I’ve spent the last 3-4 months bedridden, I’m on pain killers but they don’t really work for me 

3, I cannot walk unaided I use sticks and wheelchair but don’t go out because I’m embarrassed as my confidence as been shattered and my whole body is on fire I use it mainly for bathroom use  only but I do have good days where I can cope with it (not many but do get them) trust me I’m very grateful for those days, I’m 43 and 3 years ago had a fantastic life a beautiful family but the day I got to ill I lost everything family friends husband because they couldn’t cope with it so now I don’t burden anyone with my illness it’s lonely but at least I can keep my dignity.

4, I tend to shower as it’s easier, but I still have to climb in a bath but always helped I cannot wash my hair but I do try as I don’t get any care so I have to do whatever I can for myself. 

5, I forget everything hardly sleep and feel tired depressed lonely and stressed but if you have people that care about you then you’re lucky life should be easier, it’s a real illness with real pain and regardless if you don’t look sick it robs you of your body mind just don’t give up  you have to be strong for you I wish you all the best sending soft hugs 🤗 and lots of hope xx

Sorry when I said helped in shower I meant by using my sticks or wheelchair xx

As for fatigue I drink green tea,energy drinks or tablets, you just have to find what works best for you xx