Unsure, and would appreciate any advice

stickywicket

Oh Dakky, I'm sorry. That was, indeed, a poor way to reach 40. I hope something nice to eat and drink will be on the menu tonight.

Sometimes we each have to decide for ourselves what's the best way to tackle things. I started with RA in my fingers and it quickly moved to my ankles. I used to lean on my friends to get to school. For me it was important to keep moving but there are times when rest is better.

I hope the next appointment will bring better news. If you have questions, best to write them down and take them with you. That way you don't forget anything.

Mat48

A friend of mine who has recently learned he has full blown AIDs - suffered from reactive arthritis for two years. He maintains it was the most painful and difficult two years of his life. I think post viral/ reactive arthritis can be hellishly bad but fortunately, if it is this, it goes away quite soon usually. I really do hope this is the case for you and then you can look forward to coming years and relish the pain free days again. It's one way to appreciate life more fully when it returns to normal I guess? And if it goes away you will remember how bad it was and be able to inform people about the nature of the arthritis beast too.

The pain I experienced when my RA started has never again been repeated I have to say - nowadays (off all RA meds but on steroids) it comes in a more systemic, flu-like form along with extremely sore feet and ankles. This isn't nearly as dramatic as the stuff that went on a few years ago all around my body - especially hands and wrists. So I'm sure whatever type of arthritis you have things will improve one day soon. This really is the worst stage you are in just now. Mat x

salamander

Are you 40 today? Happy birthday!

I know it feels bleak at the moment and seems to be taking forever to find out what's going on, however, it doesn't mean to say your worst fears will be realised. Try and take things day by day. You will find out what's going on and get treatment, if necessary. I'm sorry about you losing your job. Have you got any advice on what to do next financially?

Toots

I'm sorry to hear you've had such a lousy day Dakky.

Happy Birthday, sending hugs xxx

Dakky

Thanks again all,

Yeah was rubbish way to celebrate turning forty, probably not the sensible thing to do, but last night I just got drunk It couldn't shift the pain from my knees and hips, but did a fine job of getting rid of everything else.

Had my brothers up visiting today, but as they hadn't realised how bad my mobility has become, they had paid for a table at a casino for me this coming Saturday and invited friends. Had to tell them though I don't think I'll be able to make it. Standing was a problem, but sitting has become one too, as this causes pain in my hips/lower back and throughout the lower legs. Even lying down, which I'm now doing pretty much constantly the pain is still their. Getting worse I hasten to add.

They did bring up a good point though, regarding why I haven't been sent for an MRI on my knees throughout this three months.

Regarding work, I use to help websites determine and improve which keywords they were ranking for in Google. Maybe something I can try get back into. I don't know well I can manage that sort of thing typing from my bed though.

Honestly, I'm just fed up of this whole thing, nothing seems to be improving, I thought I may have turned a corner with the knees maybe a week or so back, which would at least keep me mobile. Then it comes back and hits me even harder. I'm trying what I can to try stifle it, but things seem to be degenerating at an alarming rate. I tried to get out of bed this morning using my usual method of making sure my joints aren't at funny angles and Two snaps came from my back, sounded like chicken legs being snapped. Then a wave of pain swamped my spine for about an hour. I mean, come on! Just give me a break, lol. I had pinned so much on the doctors visit this week, bleh!

Thanks for reading my rants, must be tiresome.

Boomer13

Dear Dakky;

Not as tiresome as reading my own rants

Take care, hope you find some relief soon. 40 was not a good number for me either.

Anna

barbara12

Happy belated 40th Birthday Dakky..I see you had a good time...hope today gets better...x

Dakky

Hi all,

Was just re-posting as I feel a bit of an idiot and self doubt.

An idiot as about ten days ago my problems that had been gradually getting worse, Changed. I woke one morning and there seemed to be a turn around. I was starting to manage the stairs better and the pains I was having were starting to diminish fairly quickly.

About four days after I started to feel better I'd had a previously booked doctors appointment, I mentioned to the doctor this was the best I'd felt in ages and that I felt I was maybe turning a corner.

Of course that night the pain I had experienced for months before decided to hit back with a vengeance. This was over a week ago, all the original pain is back and it's particularly hit my mid spine, tail and bum quite hard.

The doubt I mentioned, as my doctor has previously said I might just have to ride this out for a year or so. That and the fact I look fine, except for weight loss and a couple of physical differences I and my family have noted, but my doctor says they are fine.

So I'm not even sure if I should go back to the doctors, I';ve been told to try ride it out and take paracetomol for the pain. But I still can't take stairs properly, walk any sort of distance (over four month now), sleep on my back or sides due to mid and lower back and shoulder pain, and my achillies* and feet are killing me too.

I'm doing my leg exercises everyday as best I can, no longer staying in bed and trying to walk a bit more all the time, the walking I can only build up to so far a distance and my knees crash, and I'm back to starting at small distance again.

I've spent every penny I've got on all the joint supplements going, researched any and all fancy joint cures I can and bought them too, if I can afford them. I'm eating the best I've ever ate in terms of nutrition and health as well. I've had two physio appointments, but that finished now as I had full movement and was strong.

I know I can't be diagnosed on the forum, but I just had to let it out. I've been antagonizing over going back to the doctors as I don't want them thinking I'm neurotic or deranged in some way, as I'm not. I suppose I just don't know what to do anymore.

dreamdaisy

There is obviously something going on and I hope that the referral to the rheumatologist comes through sooner rather than later. Auto-immune arthritises can be very hard to diagnose (it took mine nine years to aquire the correct label) and a rheumatologist is the only one to pursue this. When I began my troubles my then GP did not recognise what was going on with me in any way, shape or form. Yours is more on the ball and yes, you should keep in touch with her so that she is up-to-date on how things are going with you.

Living with any form of arthritis is not easy, Dakky, I think all of us on here would concur with that. DD

stickywicket

Murphy's Law, Dakky. What can go wrong will go wrong but at precisely the wrong time :roll:

Make sure you get that rheumatology appointment and do be a bit careful with supplements. They might just clash with each other. If in doubt check with your pharmacist.

And, if it helps to get it all down on here, please do keep doing so. That's what we're here for.

petals

Hello Dakky

Sorry I have only just caught this thread, it sounds like you are having a terrible time.

I am no doctor either but have you looked up the symptoms for lupus. I could be completely wrong and I hope I am but check out the symptoms and see if anything rings a bell with you.

I hope you get to see a rheumy doctor soon so that you can get some real help, once you find out the cause you are half way there.

As somebody else said, I would be careful with over the counter medications especially as you said you had blood in your stools. Has that cleared up now by the way.

Take care Dakky, I hope you feel heap better soon.

Petals

Dakky

Hi again,

Thanks for the replies, I know that some of you are having a terrible time of it too.

Well I've got the doctors again at just after ten today, going to see if I can find out what's happening with the rheumie appointment. It's a new doctor as the normal one I see wasn't available. I'll need to try and explain my normal symptoms as quick as I can and see if I tell the doctor about the new ones.

The problem I'm going to have, is that the doctor will see me walking from the waiting room to the office and assume everything is fine. They won't see me after a few hundred yard walk or taking stairs and see the impact on my knees. I imagine won't see that my feet and Achilles are now mush. The back effects me at it's worst lying down, so that'll be missed I imagine, that's even if i get a chance to give that a mention. I can imagine this is going to be a disaster and I'll come out no further forward.

I know the above is very pessimistic, but it's been nearly five months now, and nothing is getting better, just worse. I can handle a diagnosis, even if it's something I really don't wont to hear, I just need to hear something.

Hi petals, I had a look at lupus, but I can't really be sure. The only way I can describe it is degeneration to my tendons, I can literally feel them all move due to the pain they cause. It starts of with cracking in the joint, which I think is the tendon becoming inflamed, cracking then becomes really loud, then it's pain time and restricted movement. Once it's set in, it doesn't really go away and commonly flares causing some serious pain on movement. This is now happening in every joint. Even my eyes haven't been spared, I thought Wednesday evening somebody was stabbing me at the back of them, just starting to get some relief from that today.

Regarding the blood in the stool, that's went really bad now. I'm been sent for a colonoscopy and a tube down the throat for that. I eat very little now (but healthy) due to the stomach pain on eating, and the resulting bloodbath now. Lost a stone.

Anyway I'll update how I get on with the docs, thanks for all the concern

dreamdaisy

Any doctor worth their salt will not make a snap judgement based on what they witness. Nobody can witness an impact on joints, it's more a case of what we feel within them, for example I walk very well with my rollator which belies the pain which is constant.

It's best if you can present an A4 sheet with bullet points rather than trying to speak a list - conversations rarely go the way we plan because of the input of the other person. DD

Dakky

Hi daisy

Yeah I've given the doctor lists before, they photocopy them for future reference. The normal doctor types a lot of the info I give her into the computer, so I suspect the other doctors can access that as well.

I know what you're saying about the snap judgement, and I know I'm being pessimistic, but my optimism is starting to wane.

Sorry to hear and read that you're are in such constant pain, I really wish you could have been diagnosed earlier and got on the newer drugs before that had got a chance to set in. Hopefully some newer drugs can become available soonish to help relieve the pain you're going through. I always appreciate your logical input, thanks for replying.

Mat48

Oh Dakky you do sound so low - I'm sorry. The blood in stool part sounds a worry - hopefully Colinoscopy will be soon and will not reveal anything worrying.

I'm not sure when you are seeing the doctor but I really hope they can see beyond the superficial. I walk with a bit of a hobble presently and I'm sure this has developed just as a way of saying I'm not as fine as I look. If this is the case then it's subconscious and probably mostly because my achilles tendons are really tight and my toe pads hurt. But I know that I'm taken seriously by my GPs just now because I look knackered and have big red spots on my face. Sometimes I wonder if my body is starting to manifest all these strange things just to flag up that autoimmune stuff is going on within? :roll:

But yesterday I went into my rheumy consultation and he said "how are you?" and I found myself saying "I'm okay thanks" which is an out and out untruth :oops: He looked at me hard and said "really?" and so I said "well I'm hobbling a bit?". I just couldn't bring myself to say that, although I was okay at that moment in time, I'm pretty rubbish most of the time and totally wiped out.

I seem to only be able to live in the present when I'm with doctors and have never been able to lie. And I did feel fine yesterday until the fatigue and frozen feet set in later on. So I took photos and a one page sheet of new and old symptoms that are bothering me clearly laid out with bullet points - ten of them. I attached photos of swollen toe pads, large facial spots/ blisters and bright white toes as evidence. He asked to keep these having glanced through them. I'm none the wiser and still cross with myself for not emphasising the negative stuff that's been going on over the past few months. But that's why the list on the sheet with photos is really helpful and I recommend it as long as it is as brief and easy to glance through as possible.

Good luck and let us know how you get on please.
Mat x

Dakky

Hi mat48,

I too only seem to live in the present when with the doctors. When the doctors asks me about a certain joint, and that joint isn't hurting right their and then, I'll say it's fine because it is, done that very thing at the doctors today. Maybe I should say it's killing me!

I'm glad your rhumey was able to see the pain behind the smile, and hopefully the pictures and documentation aid in helping you. I'm always cheerie when I see the doctors, maybe I should go in and be a bit more forceful regarding scans and such. Someone I know just got an MRI on their leg after two doctor visits and they're fine.I know this person well, and their personality is such that they would have been forcing for an MRI from the off. I haven't been able to walk properly any distance for nearly five months, had one x-ray on my left knee at the beginning and things have got a lot worse.

The doctor today pretty much inspected my joints similar to the physio, reflex and movement stuff. Said they were happy with the movement and reflex in my achillies and knees. I pressed regarding the knees, mentioning the difficulty with stairs and walking distance and remembered to mention I can't stand for any length of time, without it causing crippling pain that can last for ages.

My back was then inspected, the doctor pressed in the middle where it normally hurts and asked if any pain was present, it wasn't so I said no, it's been giving me serious pain all week, and even now that I've left the doctors. After the inspection I was shocked to hear the doctor tell me my back was squint, this must be new as even up to a year ago I use to look at my back regularly in the gym, and it was fine. I've always had a rock solid back, so like I say, a bit shocked at that.

I got my eyes checked too, doctor said they looked fine, was glad to hear that after the bad eye pain. I was also asked about the bleeding and mentioned that I was waiting on an appointment for from the hospital, I also mentioned the pain after eating but forgot to say about the really loud noises that's effected me after eating recently. These noises are extremely loud!

Finally I asked about my rhumey appointment, saying at the rate I'm deteriorating and time passed I was hoping to see one soonish. Doctor agreed with me and said they would put me forward for one but that could take a while, I mentioned that I'd already been put forward for one by the doctor I usually see ages ago. Doctor paused for a second or two and said that's me definitely put forward for one now :?: Must have been a mistake their, as the doctor I normally see is great and I definitely remember her saying she'd referred me. Will end up crawling to that rhumey appointment by the time I see one now I imagine

Mat48

Oh blimey Dakky what a sorry tale you tell. I really hope they treat your case with urgency at last - squint back , lots of pain etc sounds pretty deserving to me.

My rheumy misunderstood me yesterday when I was trying to explain that I don't trust the kind of pain I'm experiencing just now as it doesn't seem quite real - just too vague and neuralgic. He said that pain is entirely subjective in the telling - so he could say he has a headache and no one could disprove it. But he added that in his experience people don't imagine pain - if its real to them then it should be believed. Which is great if you believe in it yourself - but what if you don't? What if you have a much higher threshold than is normal or a very low one? It seems those who grasp that they are in pain and shout loudly are the ones who get heard and examined and sorted out. We must learn to act better I think! X

stickywicket

Dakky, I'm afraid I can't help but the main thing is that you have been referred both for a colonoscopy and to a rheumatologist. These are the people who can really help you. I hope both appointments come sooner rather than later and I hope the news is as good as possible on both fronts.

Dakky

Thought I'd update this and mention I got my letter telling me I would be contacted in twelve weeks in regards to seeing a rhumey doctor. Honestly think I won't be able to wait that long though and am considering going to the hospital.

Last week my knees buckled shopping (was a bit embarrassing to be honest) and since then my whole body is on fire. Really, really didn't won't to go back to the doctors but yesterday the inflammation became to much to bear, had been told to go back to the doctor rather than go to the hospital if it got too much. But the doctor who told me that wasn't available at the surgery.

Sat down at yesterdays appointment to tell the doctor I thought some tendons may be on the verge of tearing, when I got cut short to tell me I had a rhumey appointment coming, I told her that could be months away and my legs had buckled once already and I can feel it coming again. Never got a chance to tell her about the agony from head to toe now (though I followed her literally hobbling to the room) before I was dismissively told "you can get your knees x-rayed if it'll make you feel any better" I've never even seen this doctor before, and she clearly knew nothing about me as she said "try anti-inflammotories" Which I'm not allowed. Was furious to be honest (probably the pain I'm in) Ended up being prescribed a ton of co-coeds and told good luck with the rhumey.

That's done it for me, I won't be going back. There's only one doctor who's familiar with me and she's never available. Coming out the doctors some guy drove on the wrong side of the road towards me, I had to slam on the brakes just to avoid each other by inches. Afterwards I was honestly questioning why I didn't let him hit me and maybe then I might get some proper medical attention.

I know it all sounds very dramatic, but c'mon, one x-ray at the beginning while symptoms get to the point I'm in excruciating pain everywhere, and am now pretty much disabled five months on and I'm told good luck with rhumey when that comes.

If it hadn't been the weekend and I know the hospital would be mobbed I'd be their, settling for hammering a bottle of jack daniels my father left when he passed on instead.

Toots

Oh Dakky So sorry you're feeling so utterly overwhelmed. There's not much I can offer by way of advice though. Unfortunately these things take time and it's horrible and frustrating and mentally and physically draining, but that's the way it is. I waited the prescribed 12 weeks to receive my rheumatology appointment details only to find that the actual appoint was another 4 weeks after that. As long as they are within guidelines, there's not much one can do. Now, that said, while I know you don't want to be going back to the gps, and one can hardly blame you, you do need to trust in them to some extent. The issue with the docs is probably that they don't know enough about rheumatology to DO anything for you, other than make the referral. One of the lovely ladies here has pointed out before somewhere, that gp's know a little about a lot, whereas consultants know a lot about a little.

I may be putting myself in a difficult position here, but I do want to say to you, please please don't hit the bottle - from all accounts your digestive system is suffering and this will NOT help you. I'd hate for you to take this wrongly, like I'm judging you, because I'm not. But I don't want you to feel even worse.

Sometimes when everything gets too much, it helps to talk with someone who knows what you're going through. I think that perhaps as well as posting here, it might do you a lot of good to talk to the good people on the Arthritis Care helpline, who may help reassure you. Please think about it.

Hugs hugs and more hugs x

wilv

So sorry that you are having such a bad time. Listening to your symptoms i wandered whether chronic fatigue syndrome (cfs/me) had been considered. Obs not my place to suggest but your symptoms and timing - post viral soundlike my son- in law. Initially thought he had ra as symptoms mirrored mine but he is unresponsive to pain killers, has a normal esr/slightly raised and crp is fine. In huge amounts of pain/exhaustion,light sensitive and gastric probs also throat inf and headaches.
You will get an answer eventually and sometimes thats half the battle cos its hard to fight when you dont know who the enemy is. Thought are with you x

dreamdaisy

I understand that this is not easy for you but I reckon three things should be borne in mind:

Males feel pain more keenly than females (which makes biological sense).

No matter which doctor we see we must remember that they will have seen countless other patients and thus won't necessarily be aware of our individual circumstances.

Not one professional (no matter what their field) should concur with their patients' self-diagnosis (especially in this digital day-and-age). I know from my own work experiences that people think they understand what a certain term means, but they betray their ignorance in their comments.

All of us on here know that this is not an easy time for you but arthritis has no easy answers. It also lacks the difficult ones. DD

Mat48

Hi Dakky. To be fair GPs get a short time with us and really, what can they do? She could possibly have phoned the rheumy department and tried to hasten your appointment on the basis of your symptoms - but then you don't know who else she has seen that day or what your blood markers are saying? She could have offered you a short course of oral steroids because then this would have helped a rheumy to know whether there is inflammation or not.

If you are in huge amounts of pain everywhere with no raised blood markers then it could be that you have a condition called Fibromyalgia? RA usually goes for the smaller joints first - hands and fingers - and your buckling legs don't ring bells for me. With me it started in my knees and wrists which were so excruciating that I couldn't drive or even get up and down stairs apart from sideways crab style or on my bum coming down one step at a time. Later I couldn't write or work because of the pain in my knuckles. Then tendonitis in one ankle and the knee on the other side. .Then it went for my shoulders while remaining in my fingers. That was as bad as it ever got. Now it is my feet and Achilles' tendons where the RA bothers.

I have never had the widespread pain you describe - just a few tortured joints at a time or flu-like stuff more recently. This isn't to say that you haven't got some kind of reactive arthritis or Spondyloarthritis - I haven't been diagnosed with another type so I can't say. But it took nine months from onset to diagnosis for me and it was a really dreadful time I readily admit.

What I have learned lately is just how many conditions rheumatology covers and how many autoimmune conditions overlap. Most have a spectrum of awfulness but it certainly is a very complex area indeed and I see why neither your gps or mine are willing to even hazard a guess as to what may be going in for us. Sorry not to be able to offer you more than this but I know others in similar situations and it is terrible to be in limbo. Things will improve if and when you get a diagnosis. Mat x

stickywicket

I won't repeat stuff the others have said, dakky. I just hope things seem a little less bleak today. I am thinking of you.