Hello

[Auriel]

It's ring a ring a Rosie's and you keep us up, and yes humour is such a good way to cope with thing's (but we do need to be honest with ourselves to be able to get through thing's and ask for help if we need it) I'd love to be fibro unmedicated (but the pain is a nightmare) and I swear I need a higher dose of levo (I really don't feel 75mg's is enough, they don't wanna hyper territory me though) they're taking care of you @SBee (+ I'm glad of that)

 

[Harpy]

It's ring a ring a Rosie's and you keep us up, and yes humour is such a good way to cope with thing's

Oh yeh , bet you forgot I go to sleep late, lol
“ why the chicken cross the road?
To prove to the possum it can be done”

(but we do need to be honest with ourselves to be able to get through thing's and ask for help if we need it) I'd love to be fibro unmedicated (but the pain is a nightmare) and I swear I need a higher dose of levo (I really don't feel 75mg's is enough, they don't wanna hyper territory me though) they're taking care of you @SBee (+ I'm glad of that)

My kids are a great help to me ‘if’ I ask them , though I don’t ask the too often and they all work and have you family’s.
Yes they do go cross at me for not asking for help. It’s so hard to do when you’ve been so dang independent.
Yes some or meds are definitely too low , but I haven’t asked my gp to up these doses for just over two years. Must prove my oil is helping.

 

[SBee]

An @Auriel, you are such a beautiful soul caring for us all. You are so right, the myriad of meds are a necessary means of trying to get some form of control over the mix of conditions. I have found myself more willing to push for further help, almost ' telling ' the medical staff what I need ( after much research and consideration on my part ) and replaying their part to ensure things at compatible.
Hopefully the steroids will settle the inflammatory arthritis flare down and it won't affect the fibro side if I act quickly enough.
@Harpy I understand you are in a flare too, and assume the steroids are working on the poly side. I also get Raynauds, even in lovely warm weather like now I wear cotton gloves indoors as my hands are shockingly cold! I'm going to make a note to see if this may be an indicator that my inflammation is higher. I hope things pick up for you soon.
Thankfully humour brings us outing the worse fuggy moods.

 

[Auriel]

Thanks @SBee, .
I like the word fuggy (not heard it before,) but i can think of a fair few occasions it would have fit ) but being Welsh I'd need to be careful how I word it (in case it sounds like something else! )

 

[Sueb24]

Fuggy - good one! I had one of those days last week. I find I can’t handle humid/muggy days much any more. My temperature control is awful. Always hot and the combination of muggy conditions along with brain fog makes me feel well, fuggy!

 

[SBee]

Hah! I'm in that weird combo body temperature @Sueb24 when either sweltering or ( as is more likely ) shivering even in the sunshine! Have taken to needing to wear gloves every waking hour.. Looks a bit weird but it's needed.
Think it may be worse atm as the inflammatory arthritis has flared ( 6 weeks steroids for me ) and I'm trying to see if that's when the cold but comes in. Then again it could be the fibro, or the thyroid or just bloody awkward me! I always said my internal thermostat is broken.

 

[Sueb24]

I always said my internal thermostat is broken.

I used to love the heat. It never ever bothered me but these days it seems to play havoc. I’m forever saying to people ‘Is it humid or is it me?’ Fortunately they often say it has been humid lately. I rarely feel cold - even in winter, and I absolutely hate having to wear loads of clothes.

Sorry to hear the inflammatory arthritis has flared. A friend of mine is on a course for that/and pain management at Salisbury hospital at present. She says she’s learning a lot but whether it can relieve anything who knows.

I’m having some nerve conduction tests done this week to see if I have developed some kind of neuropathy, possibly genetic. Should be interesting but part of me suspects they will find nothing so it will just be put down to the fibro.

 

[SBee]

Let us know how the investigations go @Sueb24. Something may be revealed and can be treated differently,least you are continuing to search whilst keeping that mantra ' it'll be the fibro then ' be interesting to know how you get on

Early days to see how the steroids work on the inflammation, ( and I don't want to tempt Fate here, my fatigue has seen a bit of improvement lately ) I think getting the arthritis drugs right is going to be a longer process as I am now getting more flares. Just need to keep the fibro symptoms quiet whilst it settles down. Back to Balance again.

I still need to force myself to work\rest and don't overwork the hands but as we all know that's easier said then done.

 

[Sueb24]

Early days to see how the steroids work on the inflammation, ( and I don't want to tempt Fate here, my fatigue has seen a bit of improvement lately ) I think getting the arthritis drugs right is going to be a longer process as I am now getting more flares.

When I first was diagnosed with RA I used to get regular flares. I used to go into the RA department as a day patient & be put on ‘pulse therapy’. Basically a prednisolone drip. I don’t even know if they do that any more but they helped.

 

[SBee]

That's not offered in my neck of the woods @Sueb24. I think jabs are The preferred option.

The rheumy nurses offered a prednisolone injection or an oral course of the same. She said my my GP surgery would be less of a wait to get an appt for the jab - and even they said it would be 2-3 weeks! No way could I wait that long, it was at a stage where my husband has to cut up my morning toast... So I grabbed the tablet form so I could start that day. 2 week of 3 tablets then gradually reducing down.
There does seem an improvement but the ice packs are still needed to help reduce some inflammation.

So far the the fibro hasn't kicked off worse while this is going on.

Good luck with your appt and tests

 

[Harpy]

When I first was diagnosed with RA I used to get regular flares. I used to go into the RA department as a day patient & be put on ‘pulse therapy’. Basically a prednisolone drip. I don’t even know if they do that any more but they helped.

Hi Sue24, my mum has RA, she was initially given methotrexate, she had a lot of side effects but lucky it put the RA into remission, when she can feel more pain than normal her gp now gives her prednisone, gets on top of it again then tapers off to 1/2 a pill a day.
I am currently on prednisone, I have been on it since October last year when I was diagnosed with polymyalgia rheumatica. As we try the tapering it all seems to work well till I get down to 5 mg and boom all my symptoms come back with a vengeance. Then we start back at a high dose and taper again. My rheumatologist say it’s normal for the first few tries at tapering.
I was told I had a chance of GCA ( lucky I haven’t got that yet ) but if I do I was to go to hospital immediately and they would put me on a very high dose prednisone drip.
For my fibro the prednisone helps it out to a degree. Hope everyone is doing ok

 

[SBee]

Hello @Harpy
The prednisone is just starting to take effect which helps overall pain from kicking everything else off. Im still on the 3 per day then gradually reducing down. Im on 6 folic acid a week for the methotrexate affects and ow lansoprazole which should be strong enough to counter act the hiatus hernia symptoms as well as the naproxen gastric problems! I hate all the meds but i seriously need to get the inflammatory arthritis under control before I can even think about reducing\stopping other pain relief. I did try but now in an arthritis flare so will leave that ideal for a future time!
Hopefully i can wean off the steroids ok but as with you and others it seems to be a necessary back up until a more constant med can do its proper job more successfully - this is my 2nd needed steroids in 4 months so its not looking good atm. But the fibro doesnt sem to have worsened so thats a bonus.
Take care

 

[Harpy]

Hello @Harpy
The prednisone is just starting to take effect which helps overall pain from kicking everything else off. Im still on the 3 per day then gradually reducing down.

My rheumatologist told me I be on prednisone for minimum 2 years .

Im on 6 folic acid a week for the methotrexate affects and ow lansoprazole which should be strong enough to counter act the hiatus hernia symptoms as well as the naproxen gastric problems! I hate all the meds but i seriously need to get the inflammatory arthritis under control before I can even think about reducing\stopping other pain relief.

That’s right. I did the get off all meds years ago and it’s not good. I got off them and started different meds at a lower dose so Atleast on the bad days that arnt my ‘normal’ pain days I have pills I can add for a couple of days to get back ontop of it.

. I did try but now in an arthritis flare so will leave that ideal for a future time!
Hopefully i can wean off the steroids ok but as with you and others it seems to be a necessary back up until a more constant med can do its proper job more successfully - this is my 2nd needed steroids in 4 months so its not looking good atm. But the fibro doesnt sem to have worsened so thats a bonus.
Take care

I am hoping for my body to hurry and be done with the PR . I have a few of the side effects, my skin has thinned horribly, slightest bump it tears and blood blisters up. Rediculas hunger. Unusual for me.i have gained 8 kg since November. Even though it might not sound like much that extra weight my spine can’t handle.

 

[Sueb24]

Hi there Harpy. It’s all a balance isn’t it? I’m not on methotrexate any more as things with the RA got so bad I was eventually started on biological. Thankfully they work well at present.

 

[Sueb24]

Let us know how the investigations go @Sueb24. Something may be revealed and can be treated differently,least you are continuing to search whilst keeping that mantra ' it'll be the fibro then ' be interesting to know how you get on

I haven’t had the report yet SBee but initial tests indicated I definitely have sensory neuropathy in my legs and slightly in my hands/arms. I feel the legs far more especially the feet, knees and thighs. As to the cause - could be a number of things but then again might be idiopathic. He did say if I had been on B12 jabs in the past the current line of thinking was to continue them permanently. ( my doctor stopped them last January ). So, not sure what can be done about this because all the recommended drugs are ones I’m on, or have tried or never want to be put on again!

Just realised I typed that in the wrong place! Hey ho.. brain drain strikes again! I await the full report & then see what the rheumatoid consultant says I guess.