Haven't been around much

Boomer13

Hi;

Sorry I haven't been posting much support lately. I've at least been here in spirit. Somehow I just can't seem to muster the energy right now.

Since I was last here you've all been awfully busy with flares, fatigue, angst of various forms, and some good humor. And that was after just reading for a few minutes! Best wishes everyone.

I haven't been having such a good time either. Seems I've crossed over into the AS part of the PsA family and it seems to be remarkably resistant to my current meds. I'm now starting a token trial of Sulfasalazine, which my rheumy thinks won't really help (so much for the placebo effect...) but since I have to fail two DMARDS, we are doing this for now and he will possibly be able to start me on Enbrel in January. I'm sure I will soon have dozens of questions for you anti-TNF experts!

No sign of answers for the neurological problem as I yet again failed the criteria for Fibro. My meds for this are so mind-numbing that coupled with fatigue/pain, I'm pretty much useless.

Thinking of you all and sending loads of support xx
Anna

stickywicket

I'm sorry you've been having it rough, Anna. I had noticed you hadn't been around so much but I was hoping you were on holiday. No such luck, obviously.

Boomer13

What a lovely idea. I'm always at the ready for one of those....One day when I'm feeling better.

DebbieT

Oh Anna I'm so sorry!! I hoped you were well & off doing things that aren't normally possible, I should've known better ((((( )))))

Wot part of the fm criteria are you failing? Being a 'fibro fighter' I'm glad you aren't joining our ranks, I posted a list of symptoms on Mat48's thread ... It's rather long!! :? :shock:

I'm really sorry ure having back trouble, it's awful, you poor thing!!

I have definitely been angst filled, losing Dad then my skin going nuts!! :? Things are calming now so I hope things do for you too.

I may be put on a biologic by my dermo in the near future, I'll pick ure brains if its the same as ure one

Massive hugs, you have been missed. I hope the sulf helps. Take care.

Xxx xxX

dreamdaisy

I wondered if all was well because it's unlike you to go AWOL. I am sorry you are struggling so much at the moment, these diseases do this to us from time to time, mine are having a snap at me at the mo and it ain't fun. You do what you need to do for you, we'll still be here when you feel you can come back as your more usual self. DD

hileena111

Hi Anna,
I'm sorry you are having problems....this bloom' arthritis {no matter what kind it is}
My problem at the moment apart from witing for them to decide a new date for my THR is my eyes.
Excessive tears and I've been going back and forward to the eye hospital for 3 years now and and he just keeps giving me th same nose spray that does no good whatsoever
Anyway.......glad to see you bacl

Love Hileena

Boomer13

Thanks to everyone.

Hi Debbie; My rheumy did a full physical exam this week and once again I have no tender points, except my neck upper back. He kind of passed the neuro stuff subtly back to the GP......

Hi DD, I see the "same boat" we are all in at the mo' is a tad full.....Hope you feel better soon too.

Hilena, I'm so sorry no one has been able to help you with your eye problem. The constant waiting for dates, treatments, help! is the only thing predictable isn't it? (apart from the pain that is).

xxAnna

DebbieT

I see ... I've never known anyone get a diagnosis without at least 11 of the 18 tender points, I got 18/18 only other time I scored that well in a test was First Aid at Work wen I was a Gymnastics Coach :shock:

I'm sorry ure left wondering yet again tho Have you had a Neurology referral? If not maybe it's time to press ure GP for one!!

((((( )))))

Xx xX

Boomer13

Thanks Debbie.

Gymnastics? Wow, that's impressive. It's a difficult sport, no?

I had a neuro consult a few years ago when this started. I didn't like the doc much or the NCV test he did. All he said was maybe you have a disease, you definitely have CTS. It wasn't very helpful. I will see what my GP says next week. I'm hoping she will at least rule out a brain problem; I know I need my head examined! I have a love/hate relationship with my Baclofen; it helps, but renders me limp and very muddled.

I'm pretty certain it's something autoimmune because of the pattern, so I had thought it would be in the realm of dr. rheumy. He did take my written description of what happens, so maybe it's wait and see for now. He's a very good doc so I'm sure if he says take anti-TNF's, it will be the right thing regardless of the neuro thing.

I'm just so tired. I feel like giving up and just living with things the way they are and letting it take over. It just seems the docs can't do much anyway. Oh well, I'm rambling on now and you have more serious problems to deal with. Thanks for "listening" ((()))

For you Debbie, if you go on an anti-TNF, will it be the first one you've tried? It would be great if it works really well for you....

xxAnna

barbara12

Hello Anna and its good to have you back..only sorry you are suffering like this...I really do hope that the next step will be the one that helps you...I will have everything crossed..((())xx

Toots

Oh Anna sweetheart, I'm so very sorry to hear you're having such a rough time of it

Hang on in there, perhaps your Mr Rheumy will come up a bright idea and/or get you started on the anti-tnfs. Or maybe he'll be completely wrong about the sulf and it'll do the trick. I dearly hope so, you deserve better.

Huge huggly shmuggly hugs x

Boomer13

Thank you Toots, you're lovely.

Mat48

Hi Anna. Sorry things are so rough - you do sound low. Just wanted to add to everyone's support of you here - not much to say but hang in there - the Sulpha might be the one and Enbrel if not. Try and expect things to work (unlike your rheumy!) if you possibly can. I never get any answers for my own neuro stuff and my GPs tell me that if they refer me to neurology then I will just get more knackered and despondent when I'm told it's inconclusive as 50% or more of their neuro patients do get told. I'm just learning (finally!) to go with the idea that it's all part of a whole autoimmunity thing and not to take my symptoms in isolation - we are each a whole human being after all not some random sum of parts - so I'm blaming everything on RA now. If it turns out to be something else then hey ho. Thinking of you. Mat XX

Boomer13

Thank you Mat. That sounds very sensible. I will take your advice and try to just think of it all as one process. I have this weakness where I'm terrified that the drugs I take will precipitate a demyelinating disease like my brother has. I tend to be wildly fearful of this. It could just as easily be the case that the drugs fix the problem, ultimately.

Mat48

I'm really not surprised this frightens you Anna - it must be very hard. Have you thought of speaking to a genetic counselor about this fear I wonder? It might help to have the figures for the risk of this actually happening perhaps and talk it through with a professional?

I know that my mother-in-law has a hereditary heart condition (the one that usually strikes young people down out of the blue while engaged in sport or physical activity) and I went through a period of great anxiety on my three sons' behalf when we found this out. We spoke to a genetic counselor about the chances of this heart condition developing suddenly, as it can, and talking things through with her really did help.

I too am developing a fear of drugs and that is contributing enormously to my poor state of mind currently. But as a podiatrist said to me a few weeks ago "steroids and DMARDs may come with unpleasant side effects and make you depressed - but so does RA and you can't just come off it either!". The fixing would be so wonderful if it happened wouldn't it? Mat xx