How do you describe active disease?

Boomer13

Well, it sounds like it was a good party then, Mat? And, glad you found your son.

I know it's likely tedious for those arthritics that have been there, done that in the way of answering unanswerable questions for us newbies, however, just talking and discussing issues is helpful, even if there are no direct answers. We get different perspectives and benefit from others experiences. It is helpful, and I appreciate you all that have answered my posts with your support and how you have dealt with things. In my part of planet arthritis it is difficult to find anyone to talk with regarding these things and, I really don't want to be a bore. I hope it's not too tedious.....I used to have the energy to think of funny things to say. I rarely do anymore. I'm zombified most of the time and I hate it. DD, best wishes for your move. You never ask for pocket duties, but maybe you could use some of us nattering away in your pocket while you're moving? We could keep you laughing at least?

Toots, thank you for your note and support. Pocket duties for the 10th, absolutely!

xxAnna

stickywicket

I don't find it tedious answering questions from newbies, Anna. If I did I wouldn't be here as much as I am On the contrary, it's quite a privilege to be able to help people out or at least point them in the right direction for help. I guess, as you say though, some questions are unanswerable.

It might be that recently diagnosed people have a much higher expectation of medicine than those of us who have had arthritis for most of our lives. Those who, for most of their lives have gone to the docs to be cured of things must find arthritis quite puzzling as much as anything.

I just got it, knew there was no cure (though, for many years, I hoped there might be) and so forgot about it as much as it would allow me to. I never had any interest in odd things that might happen in addition to pain etc. I have/have had lots of things that people now give a name to – bone spurs, Achilles tendonitis, Plantar fascitis, ligament damage, rheumatic nodules etc. To me they were just part and parcel of my boring disease and the meds that made me throw up regularly, damaged my stomach and gave me a hiatus hernia. I didn't want to know about them or talk about them. I wanted to talk about cricket and poetry and music and to engage with people in the same way as everyone else. As a family we used to laugh at my Mum and her sister as whenever they got together all they seemed to talk about were their mutual ailments. I didn't want to be like that. I still don't.

I hope you can re-connect with the 'funny things to say' because this is a very funny disease and it lends itself to laughter. Yes, there are times when the only rational response is to weep or whinge (Please don't think I'm saying you whinge :oops: ) but mostly I find it responds best to a good belly laugh or two taken three times a day or as often as needed.

Mat48

I always feel that your response to RA is rather healthy SW and much more the response I would like to have - that of resignation and acceptance rather than bewilderment and obsession that seem to be my response - and perhaps Anna's a bit too? It was the way I reacted to my eczema when it was so dominant. Why would I want to talk about something that caused me pain or made me itch. I never really questioned it or even moaned about it. It was what it was and never went away - just worsened or levelled out depending on environmental factors and stress levels.

For some reason - perhaps because of the drugs mostly - I don't feel this way about RA at all. I think this is because for me its very ellusive and shows up in non classic ways that make me think its no longer RA or that I don't belong to a place where things are mostly muscoskelital and where arthritis is the focus and the thing to be feared or darkly humourous about. Numb, cold wet legs and facial hives don't inspire any jokes in me much yet because I haven't yet found a place for them? So hoping they clear off back to where they belong (not on me!) and let me get used to the idea that I have RA - rather than worrying that I have something else which may turn out to be even worse? I'm not sure if this is how Anna feels too but I sense it might be perhaps. Its just very difficult to accept something that doesn't seem to fit anywhere? :roll: xx

dreamdaisy

I don't find answering questions tedious either, of course they will be repetitive but that is because every newly-diagnosed person is new to the situation. I think it is useful for people to read other threads and not just their own, there is useful information everywhere as people post with their own experiences in reply to others who may be struggling.

I used to feel cross about having arthritis but realised (thanks to Sticky's wisdom) that that was pointless. It's here, it's staying and it can't be cured. I could whinge, whine and moulder away but why should I? It has to live with me and not vice-versa. I have had to adapt, adjust and alter what I do and how I do it but that enables me to do more. I am fully aware that if I overdo things then payback will occur but, as that is under my control, I won't moan if it does.

Our characters dictate our response to life and its challenges. I wasn't expecting arthritis (I thought it would be diabetes after years of inhaled steroids) but it's here, I have to get on with it and it has to get on with me. End of. I reckon I will flare after the move but I won't be sitting there waiting for it because it might not happen. There are two guarantees in life neither of which is a flare. DD

Toots

How are things a couple of weeks on Anna? Hugs x

Boomer13

Oh Toots, you are lovely for asking. Thank you, I appreciate it.

How are things? Weird sums it up, I think.

I had a nasty bout of joint pain around the 20th of Nov and a flare of psoriasis. My GP is asking rheum if we need to increase sulf. dose :shock: It was weird as it only lasted 5 days, when normally it would have settled in for a good long time. So I guess the sulf is doing it's job.

This week, the pain seems to have eased off in most joints and I've lowered my Tramadol and codeine again. I don't think I will agree to the sulf-dose increase as I have considerable side-effects: headache, fatigue, tinnitus. It has helped most of the joints except back, hips, shoulders.

I'm pushing on with my exercises and was able to put weight on the heal of my hand for the first time in eight years, so that was worth celebrating ! The down side is that the exercise is worsening muscle problems, bursitis, some tendon problems around my ankles and I'm extremely exhausted/painful after very modest exercise so I don't know what that means. I'm pushing on though, and have at last convinced myself that I am trying hard enough to get better. I had expected I would feel better, not just less painful. The exhaustion is really hitting me hard and I'm finding everything very difficult. Why did I expect it would be anything but?

I'm thinking I may stay on triple therapy and just accept that this is as good as things can be for me. After reading about anti-TNF's, I realise that that are not for people with demyelinating illness in their family, and since my brother is disabled with one of these diseases, I may not risk going this route. I haven't fully made up my mind and will discuss with my rheum next time.

It's somewhat stressful around home right now as husband is stressed and he likes to share I injured my good hand the other day when it gave out on me, so am down to one bad hand for now, and we have no water just now due to a problem with the well. Such is rural life

Sending ((())xxAnna
Toots, will be in your pocket for the tenth....

stickywicket

Boomer13 wrote:

I'm pushing on with my exercises and was able to put weight on the heal of my hand for the first time in eight years, so that was worth celebrating ! The down side is that the exercise is worsening muscle problems, bursitis, some tendon problems around my ankles and I'm extremely exhausted/painful after very modest exercise so I don't know what that means. I'm pushing on though, and have at last convinced myself that I am trying hard enough to get better. I had expected I would feel better, not just less painful.

Speaking purely as an amateur, Anna, this sounds right to me. When muscles haven't been used to exercise they so protest quite vehemently at the outrage And exhaustion sounds pretty normal too.

In my book 'less painful' is better. Indeed, there is no other 'better'. Hopefully, in time, your muscles will accept that this is what's required of them and they're going to have to do it whether they like it or not

Well doe on persevering.

Toots

Boomer13 wrote:

The exhaustion is really hitting me hard and I'm finding everything very difficult. Why did I expect it would be anything but?

Probably because we still live in hope xxxx

Seems to me like the sulf is making a difference to you, and even though you're still experiencing side affects, it might be worth taking your rheumy's advice and upping the dose. I've forgotten how long you've been taking it and at what dosage though, and I know we're all different, but it took me a good few months to stop feeling [XXXX] because of the sulf. I just feel [XXXX] now because of the RA (or whatever it is). Hang on in there, you're doing great!

I don't have the experience to say, but while you're seeing positives from your exercising, please don't push yourself too hard. You might be doing 'too much' and I have no way of knowing how you tell. But if you're flaring and exhausted, it's possible that you're pushing too far.

Certainly lots to consider with the anti-TNF's given your family history, do talk it over with your rheumy.

And I hope hubby is less stressed = Anna less stressed ... soon!!

Hugs! xxx

[post edited by Moderator YEH, swearing]

Toots

I have replied Anna. You may, or may not, receive the moderated version of my message once the moderators have removed my reference to a confused freshwater fish.

Boomer13

Sticky, I thought you were a professional now

stickywicket

Alas, no, Anna. I am merely an amateur arthritic but I am more than willing to turn professional if anyone is willing to pay me for it

Mat48

Well done for trying Anna - sure it will reward you in the long term if not in the short.

I tried to do yoga on my nintendo Wii tonight in an effort to subdue the flu-like ache and help me sleep better. I'm determined not to take Naproxen because it exacerbates the hives. I got down on the carpet to do something and had to get husband to help me get back up again so stuck was I! The dogs joined in the efforts and little Ruby, ever the opportunist, decided to try and snog me while I was down! :shock:

Boomer13

I'm still wrestling with the concept of no "better". Somehow I'm still deaf to this.

It's confusing regarding neurological conditions and antiTNF's. There is some studies that suggest improvement for some people and others where the disease is brought on with these drugs. I'm not certain that I don't have signs of my brother's neuro disease, I have slow function according to test I had (NCV). He's never had his fully diagnosed because he would have had to travel away for weeks of testing, and he had two small boys at home so didn't go. His doctor said "it looks like X" demyelinating disease. As far as I know, he's the only one in our family to have it.

What would you do? Try an antiTNF and take the risk of developing a definite neuro problem.

Or, stay on meds that are working only partially?

Mat48

Anna no one can really advise you on this one - its too big. For what its worth I did read a post by someone a while ago in which she said she couldn't take anti tnfs because her brother or sister had MS - and it was the rheumy who told her this. Same goes if you've had any kind of cancer. This is stuff you need to talk to your rheumy about really.

I was relieved when mine said I wouldn't qualify at present because all swelling was in my feet. Looking back I could have pushed it and pointed out that he hadn't actually examined my hands, wrists or elbows and that my ESR was sitting quite raised at 52 and I'd failed 3 DMARDs and I know one of my knuckles is permanently swollen. But I chose to keep schtum because I'm concerned about the nerve side of things too. Admittedly mine isn't as extreme as yours but it would concern me if I had been offered them I think.

But if your rheumy considers that the benefits out way the risks then I know you trust him and that would be the guiding factor for me. Very hard dilemma for you though I can see. Mat X

Toots

So my post was moderated, but it's there now. Totally off-topic, but seriously? That's not a swear word in my book. But now I know ;-)

Hugs Anna x

dreamdaisy

I was wondering about this in the early hours of this morning. I have no idea what 'better' feels like ( I link it with good-quality sleep, having something resembling energy and not coming apart at the seams after standing still for longer than two minutes). On the other hand I do not class myself as being ill. I have two kinds of arthritis and fibro but, basically, I am in reasonably good over-all health thanks to the meds and my being careful with what I do and how I do it.

I think I have easier days when things are more comfortable and then the harder days when they are not. I don't get 'better' days though, pain sees to that. DD

Boomer13

It's a complex thing isn't it, DD? For me, I've improved in some of my joints, then there are are a few that remain very painful/swollen and ome that are worsening. This latest advice from my docs to over-ride my fatigue/pain and push myself is not at all how I was "trained" to handle my symptoms. It's created a lot of pain and other symptoms which we have added other meds to deal with. I do not feel better at all, although if I attempt to be objective, I realise my ability to lower tramadol, codeine, take my stimulant meds for the fatigue and muscle relaxants for the cramping/aching, I think I must be benefiting by getting stronger/stretchier muscles. The fatigue is piling up day by day so I'm not sure what will happen there... I do have the internal drive to push myself hard as that has always been required of me. I drove myself hard through the first five years of horrid wrist pain because I have the fortitude to do it, and no one believed me that the pain was that bad (except dear husband). I do have a little bitterness about it all, I will admit. If a doctor tells me to do this, then that is what I'll do, teeth gritted. None of this is about being comfortable is it? It brings out an edgy, gritty, tough as nails side of me, although I'm whimpering really.

I guess I'll just carry on until it provokes enough severe pain that the meds don't touch it and I retreat to my bed. I've been there before. I'm reducing my pain meds I guess because I feel they are contributing to my fatigue and mental dysfunction, not because I'm really very comfortable. I've been on considerable meds for so long I guess I want to know how I really feel. The using pain-as-feedback system. I was also told I would have a nightmare-time lowering Tramadol; this has not been true, although the pain is pretty gross (is that a swear word?)

My husband looked at me last night and asked me how I carried on living like this. It's not fun, but I guess if you were a doctor looking at me you might say well, she's "better" than she was. If it was not a seroneg arthritis, and I showed more objective signs in the way of bloodwork and swelling, I don't think I would be asked to conduct such an experiment on myself. It's the sneaky, devious nature of PsA and whatever else I have.

Thanks for the discussion everyone.
xxAnna

Boomer13

Toots, it's all carp, isn't it?

Boomer13

Mat, cheers for Ruby giving you a snog. Have to love dogs!

I get stuck backwards on my exercise ball, stretching out kyphotic back and gimpy neck. Husband insists this is good for me when he grabs legs and starts rolling me closer to the floor and dogs' tongues....Ugh, not really fond of their breath, and I've seen where their noses go...

dreamdaisy

Docs know the theory but we are the ones living with the reality. Listen to your body - do what you can feel you do but don't push yourself. Gaining muscle strength takes time and much effort, it won't happen overnight - only disasters occur that way. Reduce the pain meds sensibly and slowly to give yourself time to adjust to the increased levels of discomfort (how's that for understatement? ) but, above all, be kind to yourself. That is the most important thing, set goals you can achieve, rest when you need and don't be pushed into doing more than you feel you can manage. ((())) DD

Boomer13

Ok DD, you've got my tears going now. I don't think the doctors appreciate how this is going for me and I'm afraid if I don't stick to what they've asked me to do, I won't be taken seriously. I do know where it's headed, but I don't think they will listen until I show them the results of their nasty little experiment. I will rest a bit today.

Toots

Boomer13 wrote:

Toots, it's all carp, isn't it?

haha, yep, it is!

Rest up honey, I think you need and deserve it. Nobody can say you haven't been trying and I honestly think there's a lack of understanding from the medical profession. Don't break yourself so badly to prove a point sweetie. Hugs, hugs, and more hugs x

dreamdaisy

Oh hon, that was not intended and I apologise if I have upset you - I meant it kindly. :oops: Doctors have difficulties with us at times, we have to explain so much and we cannot rely on them remembering things about us. I know that when I see my rheumatologist I must remember that she has probably seen 500 patients or more since our last meeting so how is she supposed to remember everything about me? Mind you, I also find that I tend to stand out a little in people's memories because I always ask about them, doctors, receptionists, nurses - show interest in those you are with and that may well be returned. Cynical? No, an investment in my interests. (Selfish? Maybe )

This is a tough time for you (and your husband) but do not for one moment think that the doctors will not take you seriously - they need us to be committed patients but not at our detriment. They have a role to play, as do we, but as I said; theory on their side, reality on ours. DD x

Boomer13

Oh no DD, I didn't take it wrongly, the tears were just me realising how exhausted I am. It mostly means I'm very tired. I didn't take offense.

I think you have said some very good things here. I will have a think on it all.

I'm sensitive to the fact that I am on disability and feel like I should be trying very hard to improve my health and return to work if this is as better as I can be. So, if my docs say do X, then I will and leave it to them to re-assess me later. Then, I can honestly say I gave it my best, gritty effort. It wouldn't hurt if I let my GP see a few tears, as I am mostly very composed in spite of how I really am feeling.

dreamdaisy

The 'brave face' approach is a useful tool to get us through the day-to-day nonsense of our lives but the time to let it drop is when we are with the doctors. If they do not see how things really are with us then they cannot make fully-informed decisions about us and our treatment.

You are on disability for a reason - you do not have good health and you may not be easily able to regain it. You are not a fraud, you are not lying and you are not swinging the lead because you genuinely are someone in need of help. We as patients have a large part to play in helping the doctors to treat us and that begins with our being very honest about how we are coping or struggling. DD