Newly Diagnosed

[Grace]

Hi all,

Thought I'd pop in and introduce myself I'm recently diagnosed with Fibro (2 weeks ago) but suffered with M.E/CFS for almost 8 years, what a journey! I'm also diagnosed with Printzmetal's Angina and Hemiplegic Migraine.

Am on lots of meds for the above, plus more meds, neuro has started me on 75mg Pregabalin twice daily for 2 weeks then to up the dose to 150mg twice daily, also have first physiotherapy appointment tomorrow. Waiting for appointment for MRI scan of head & neck.

Love Grace x

 

[diamond]

Hi Grace I am in the UK too. I have had fibro for about 8 years too. Mine started with bouts of chronic fatigue many many years ago that i tried to ignore as something permanent and would have long periods of remission as i was only in my 30's then. At 47 the pain started.

Welcome to this site. There are lots of nice people here to offer you support and share stories or give you advice.

 

[Grace]

Hi Willow, I'm in Suffolk! thanks for the welcome. It's such a wretched illness isn't it, I'm spending more & more of my life relapsing in recent months, can barely get up some days so I cherish the times I can function. Am hoping physio might help a bit.

 

[scren]

Welcome Grace! Please let me know what happens with Physio Therapy! I went about 5 times they were using dry needles in my neck. didn't really do anything for me though! I would like to know what they suggest for you and if it works! I would go back to physio therapy and try something different!

 

[Grace]

Hi Scren, thanks for the welcome! I honestly don't know what they'll do with me at physio (probably throw me on the scrap heap!) some people here in the UK have said they're very knowledgable & helpful, then others have said they've been of no use at all! I expect it depends on who I get to treat me!

I'm so fed up of feeling so grim I'll try it & if it's rubbish I'll move on to find something else. I'll definately let you know how it goes, what they suggest etc. Yes after 5 visits you would expect to see some improvement however slight!

Oh, by the way I also see an Osteopath (pay privately) and I find the treatment is a bit hit & miss. I can sometimes get instant pain relief, yet other times it can make no difference or make me feel worse!

 

[diamond]

hi Grace nice to have someone from the UK to join in....there are a few of us. I had physio years ago when i was told i had a frozen shoulder and plantar fasciitis in my feet..the exercises i was given tended to flair things up as they took my arms and shoulders into positions i now know to avoid due to how my fibro responds.

It was my intolerance to physio that gave my consultant the info that led to the chronic pain/fibro diagnosis.

Everyone is different and i hope physio helps you. Go carefully though...and take it in small steps so you can feel how your body responds after a few days.

I hope you get someone who understands fibro well. Let us all know how you get on.

GOOD LUCK x

 

[Grace]

Hi all, thanks Willow....

Well I had my first physio this morning, I did some gentle exercises more like stretches really. The therapist gave me advice on posture, sleep issues (some info leaflets). We spoke about my medical history as there's a lot of other health issues that affect me, so she wanted to know about all those, and she asked me how Fibro affects my daily life/functioning/pain, the level of it all on a scale, 0-10 and percentages that type of thing. I said I don't know what it feels like to be pain free.

She's suggested I try hydrotherapy (6 sessions) at the same hospital, so I arranged all the appointments while I was there first one starting next month. I said I'd try anything the way I feel & if it doesn't work I'll move on to something else.

Anyway, I've felt so grim this afternoon, nauseous, flu like and not been able to do anything (nothing new). But I'm also feeling very tearful, down....I suppose Hopeless, Powerless, Confused, Disorientated is the best way to describe it. It's really unlike me as I can usually plough through it xxxx

 

[diamond]

Ah you poor love. I think its the shock and fear maybe . You build yourself up thinking physio might be the magic answer to revolutionize your life and then your hopes are dashed again that its not the case.

It is also exhausting talking...filling forms going over all your health issues saying the reality out loud somehow makes it all the more real...perhaps that is why you have come home overwhelmed and powerless.

I am going through this kind of thing at the moment in a different way because my fibro has got so much worse...you hang on to hope its all a bad dream and you will wake up and things will magically go back to how they were or at least good enough for you to enjoy some days.

The hopelessness and powerlessness this illness can bring is awful.

There are people on here who have had good relief from hydrotherapy and i am truly hoping it improves your pain and mobility.

If i was in Suffolk i would pop round and give you a hug from someone who feels you suffering xx

 

[Grace]

Hi all, aahhhh thanks Willow, Right back at you.

You're right, it's the realisation this is going to be a long road. I wasn't expecting to feel so low, it was an exhausting experience trying to explain everything that I've been diagnosed with and how it affects me and yes it was very overwhelming.

Very sorry to hear your fibro is worsening, sometimes it's difficult to be positive isn't it when so much of our former life is taken away from us, ability decreases and suffering increases. Got to have hope, no matter how bad things get.

I'm hoping the hydrotherapy will help & give me some relief even if it's for a little while xxxx

 

[diamond]

Let us know how the hydrotherapy goes. I know you said the first appointment is next month but keep us posted on your progress Grace.

 

[Grace]

Yes most definately Willow, thanks muchly xxx