This time it's flattened me....

Boomer13

Despite methotrexate and prednisone I am just flattened by another big flare. I guess that's what it is. It's more neuropathy that started a few days ago with horrid fatigue and fainting when I was out for the day with husband. I had to go lie down in the car. Then the neuro symptoms started where all the muscles in my legs and back are jumping wildly, tingling. Headache and pain down my neck and femur pain. About four hours later the joint pain really kicks in so I load up on the pain dullers. I am so sore everywhere. Next I'm going to take my hydromorphone which will render me practically unconscious. No triggers that I can think of as I haven't been doing anything.

I don't know why I'm posting this other than I haven't had a episode like this for awhile and it's always so extreme and frightening. Today the bone pain and the muscle 'fasciculations' as they are called, are keeping me down and extremely painful. I don't know what to do next, I'm seriously thinking of trying a quack-vitamin cure right at the moment, anything. I'm not normally irrational but I'm feeling pretty desperate. Sorry, I guess I just wanted to whine; this has been going on for so long and I can't seem to get anyone medical to really listen. Just fed up. I don't if it's all the PsA or if I could have overlap with something else. If it would just settle down to a dull roar I could manage with my normal level of misery and dysfunction.

Just hoping a whine might help in the short-term at least.
Best to all of you, thanks for reading my whiney note.

PS I finally got the pharmaceutical grade folic acid - finally. Was hoping that I could feel it helping, then this started.

dreamdaisy

I reckon that very few get by with any degree of success with just meth and pred. I am surprised that you have not been given the option of any other meds but it could well be that I have lost track of you and your difficult situation - if that is the case then I apologise. :oops:

I have had a fair few years of taking different meds and not achieving too much in the way of relief but I have now learned to accept that my view of relief was completely unrealistic. There is something to be said for feeling 'moderately grotty', I also have recently had a tough time (though not as tough as you) but that seems to have passed and I hope this rough patch you are going through soon ends. I know that you are a keen one when it comes to doing research and I hope you have read more than once that things do ease, given time.

Be kind to yourself, Anna - believe you me that helps. I wish you well. DD

Megrose489

So sorry to hear what a tough time you are going through. Just to offer some support and hope that things soon improve.

Take good care of yourself.

Meg

kentishlady

Do hope you will soon be feeling a little better. Take care of yourself. Beryl (((())))

dibdab

So sorry to hear that it's a rough time for you. Just wanted to send some sympathy and hugs. {{{{{{{{{ }}}}}}. Do take some time to be gentle with yourself.

Deb x

elmanc

Hi , I am a new to the Forum, however can identify with some of your symptoms, however you seem to be going through a bit of a rough time at the mo.
Well I just wanted to offer my support and hope that things improve for you. Unwind on your trip if thats possible. Best Wishes Steve :-)

dachshund

Hello Boomer
I hope things will soon calm down.
(((((((((Boomer))))))))
take care
joan xx

elmanc

Ignore the trip comment lol I am a bit woozy today and seemed to have added a sentence from another post. Hope your day is improving :-)
Steve

stickywicket

I, too, hope things soon calm down for you, Anna. Does the neuropathy usually set off the arthritis or is that something new? My husband gets benign fasciculations in his legs but they are a minor irritation and cause no extra problems. I do hope today has been a bit better for you.

frogmorton

I am sorry you are so very poorly at the moment and assume you are on your super-strength meds.

My fingers are crossed for a rapid recovery from this bout :? .

Love and ((()))

Toni xxx

destiny0321

hi just to add hope you feel better soon hugs coming your way

dreamdaisy

Hello Boomer, how are things with you now? DD

Toots

Oh Anna, big gentle hugs coming your way xxx I hope things are easing slightly and if not, well, sending you some strength xxx

barbara12

Hello Boomer
Sorry I cant offer any advice, but just to say I do hope you get some help very soon and more to the point..some relief...sending you some very gentle hugs ((((()))xx

Boomer13

Thank you all so much for the TLC and well-wishes. Virtual hugs are surprisingly comforting, I'm finding

I am starting to feel better and have stopped taking my coma-inducing pain relievers for now so at least I can look at the computer screen again. I guess I'm going to have to push for a doctor to look harder at the neuropathy problem for me; it was all messed together with arthritis symptoms so, even though I thought I may have the family neuropathy, I couldn't unravel it from all the other symptoms.

To answer your question Sticky, the onset of the neuro problem always seems to trigger joint pain, so I guess it's related somehow. I like the sound of Mr. SW's "benign fasciculations", does this mean he does not have any pain? I like the sound of "benign". Mine are very painful, it makes all the muscles in my legs, back, stomach roil and then go rigid. The only drugs that help are flexeril, gabapentin and hydromorphone. These in combination are particularly stupefying. Still, at least there is relief.

DD I certainly could not expect you to keep track of my drug history :? I can barely do that. Because of dear DR. whatszit (my first GP) and my own naivety, getting in with a rheum was delayed and my muddle of symptoms has become impossible for me to articulate effectively to the various doctors, even though I feel the new ones are very competent. I did have a good opportunity to have this investigated when my symptoms were new several years ago, but GP down-played my symptoms and shrugged it all off as fibromyalgia, hence the problem with catch-all diagnoses; symptoms can be made to fit. DD, looking forward to finding the usual "moderately grotty" you mentioned .

This time, I just had the neuro problem with only moderately bad joint pain. The neuropathy is still persisting but has lessened at the moment and the severe joint pain is already easing off. So, maybe it is a separate problem :?: I'll be seeing my GP next week so I'll talk to her about it then. I think I may ask for a new neuro consult. Sorry, this is becoming long-winded, I'm just rather confused by it all.

In the days since this latest episode started last week, the dog has come down with pneumonia (she has chronic health issues too) and the fridge has died. Surprisingly, I'm feeling relaxed about it all and sure the various disasters will be taken care off in time. I walked through the kitchen today and thought we'd had the rare indoor tornado come through!! Poor husband, he's a little overwhelmed at the moment.

Welcome to the forum, Steve. Don't worry about extra comments added while feeling woozy. I think that happens to a lot of us. A trip sounds wonderful though . Thanks for your support.

Thank you Barbara, Toots, Destiny, DD, Sticky, Joan, Steve, Deb, Beryl, Meg for your replies((())). I'm still pondering how virtual support from everyone can be so reassuring but it seems to be, for me anyway. Hugs back to all of you,

Anna

Boomer13

and xx thank you Toni frogmorton. Sorry I left you off the list.....

Boomer13

I guess I'm not so much better. I went to my chair yoga 30min session and could barely do the exercises I'm so weak and shakey. This doesn't sound like anything PsA could do does it? (I know you're not doctors, but I still value your opinions) I've had this many times before (& before mtx so I know it's not responsible) and always slowly recover after a time.

Should I go back to the doctor while symptoms are fresh? I can manage my symptoms at home until I see her next week so it's not really an urgent problem, but maybe it would be better to see her while it's active? Sorry, I'm a bit hair-brained and unable to decide even this for myself :? . My old doctor got fed up with all my issues, and now I think nothing is relevant if I can manage at home.....The pain part is at least under control now thanks to extra gabap.

Gosh, I see how many of your stories I've missed. Sending out some extra support and hugs to all in need, I'll get caught up on the forum soon.

Anna

Toots

Hugs Anna x

My novice opinion (for what it's worth!) is that you should try to see your doc before then. As you point out, it's worth her seeing you with the relevant symptoms. You shouldn't just ignore this because a previous doctor got fed up with you, it's you and your health and I'd be back and pushing for some investigation at the very least. Now that may be because I'm new to this lark, but that's what I'd be doing!

You say you can 'manage' it at home, but personally I think you need to know what it is you're managing. And just getting by is not good enough. It's definitely relevant when it's making you feel so bad

More hugs xxx

stickywicket

No Mr SW has no pain, only involuntary twitching. It was investigated in case it was Motor Neurone Disease but it wasn't. It tickles him and is annoying but that's it. If yours ' makes all the muscles in my legs, back, stomach roil and then go rigid.' I can see how it might set off your arthritis as it will give your joints a sudden, violent, unaccustomed workout.

frogmorton

Anna

Of course you are forgiven!! Blimey you have enough to worry about.

Yes in my opinion back to the docs while the symptoms are still fresh is exactly what I would be doing.

Please do let us know how you get on

Love

Toni xxx

Boomer13

Thank you everyone for your support. I did go to see GP last week, and I go back tomorrow. She upped the gabapentin dose and added a muscle relaxant for now (oh great, more sedation zzzzz! :roll: ) Still having lots of muscle spasms and tingling but at least I feel like I relax and sleep a bit at night. I've been referred for a second consult with a neurologist so hopefully that will lead to answers.

The prescription folic acid is working well for the nausea and methotrexate hangover.

Firmly of the belief now that we need to advocate for ourselves through the medical part of our disease "adventure".

xxAnna

maria09

Hi Boomer
Sorry I've only just seen your post
Been too wrapped up with my ESA tribunal c**p
I hope all goes well with the docs and they can get you sorted
(((( ))))
Maria

Toots

While I know you don't want more sedation (!) I'm glad you find you can actually relax of an evening now. Keep self-advocating! Hoping neuro will be able to shed some light and find a better solution for you x

bubbadog

Hi Boomer, Sorry to hear your dealing with the flare up from hell! Glad you went to see your G.P with your symptoms, it helps them to understand what your dealing with so they can try and help you. I know your not to pleased to have more strong meds but sometimes you have to swallow the fact they will make you feel like a zombie so that your pain is managed. Hope you get past the worst of it soon so you can get back to some sort of normality.

DebbieT

Hi Anna,

I know I'm too wrapped up then exhausted in my own stuff at the moment but I just wanted to offer a (((( ))))

I can't remember if I told you my tingling has been diagnosed as complex migraines? I'm on Topiramate for them. I really do hope they help you soon but try not to get too hung up on a diagnosis if they can assist the symptoms!! Easier said than done tho :?

Take care huni.xxx

Boomer13

Thank you all for your kind replies.

I don't know what to say. My symptoms have worsened and I'm now on a new med and quite a zombie. Hoping I get some sleep finally.

sending many hugs (((()))
anna