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My Arthritis Hell Continues


davecov

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Absolutely accurate about this getting older lark. I hit 70 in four weeks time, and cannot say I relish the prospect. I have a bit of arthritis in my knee which gives some pain, but I am keeping moving. I have had essential hypertension since my mid 40's and so used to tablets as better than being dead (when I had all the tests etc, the consultant asked me about my family history, and just said this is why your BP is up). The only good side is that my eyesight is slightly better as the eye changes shape and so I become less shortsighted. 

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  • 3 weeks later...

Just got back from hospital after having a colonoscopy. When I was on the table and the procedure about to start, the surgeon said that the report of my last blood tests were fine. My iron levels are normal and my haemoglobin count is normal too and he said that in view of the tests over the past few weeks, the Methothrexate could be considered as the cause of my abnormal levels and it wouldn't be necessary to have the colonoscopy if I didn't want it. Having suffered for the past twenty four hours fasting and taking Plenvu, I decided that I wasn't going to put that to waste! So, it was done and everything was clear. The hospital are cancelling next week's upper endoscopy as that isn't necessary either.

 

My blood pressure was also normal and my blood glucose level today is 5.0. Good news all round and I have another two sets of blood tests  in February before I start on Sulphasalazine, for which I have already received counselling.

 

As for my Rheumatoid Arthritis, the symptoms are much reduced at the moment, in fact it is the best it has been for months. I just hope the Sulphasalazine will be the missing piece of the jigsaw puzzle.

 

Dave

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2 hours ago, Pete in Lincs said:

Sounding good, Dave. And you've escaped the upper colonoscopy. That one's horrible!

No, it's Ok so long as they wash the camera first, after it's been used for a colonoscopy.

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  • 3 weeks later...

Latest update on my Diabetes and Rheumatoid Arthritis situation.  Two days ago I had a three-monthly Diabetes review and I was told that I am in remission, not even pre-Diabetic. As a result my medication has been reduced from three to one tablet a day. We will see how that goes for a couple of months and I could end up not needing the medication at all. Conversely, it could go the other way if I am a naughty boy and the medication has to go up. Despite the good news about the Diabetes, my Rheumatologist has asked me to take daily blood glucose levels due to concerns over my blood results (more on that later). More good news is that my cholesterol level is down again from 3.2 mmol/L to 2.1 mmol/L and in the last two weeks I have lost another seven pounds in weight.

 

It is not all good news though. My doctor was furious that the hospital cancelled my endoscopy as my blood results are still causing him concern. He thinks that my kidneys may not be functioning at 100%. He had expected to see an improvement after I came off the Methotrexate but the figures are remaining stubbornly low. Thing is, the figures were low long before I started Methotrexate. He has again referred me for an endoscopy which I can expect to have in the coming weeks.

 

All this malarkey with my blood results is having an effect on the treatment for my RA. I cannot start taking the Sulphasalazine until my blood results are stable. My Rheumatologist is expecting me to start on the Sulphasalazine on the 1st of March but that is dependent on my next blood test which is due on Tuesday. My RA symptoms haven't been too bad generally but my hands and ankles are still troubling me.

 

Ironically, I have been very productive on the modelling front in the past few weeks and have managed to rig a few planes and done some very fiddly PE work on another model . The downside to all the fiddly work is that the following morning, my hands are almost useless, with very little grip strength. Modelling is then out of the question for a few hours but that has given me plenty of opportunity to go through every room in the house, clearing out the crap that I have hoarded over the years! That has been quite therapeutic but there is still a long way to go.

 

Despite the concern about my blood results, things aren't as bad as they were. I am more concerned now about my 93 year old mother who has just been diagnosed with Alzheimer's.  She lives  380 miles away from me so I can't just pop round, but my nephew and one of my brothers live nearby and they keep an eye on her, do her shopping etc. I am due to go down to see her in April, a visit that was supposed to happen in October but due to my medical issues, it had to be delayed. Fingers crossed I won't have any reasons to postpone it again.

 

Dave

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  • 2 weeks later...

Just been to see my GP and it is not all good news. My diabetes is now in remission and I am managing my Rheumatoid Arthritis quite well, with the number of flare-ups reducing markedly. My Rheumatologist has agreed with my request to hold off taking Sulphasalazine until such time as it is absolutely necessary to take it. There is also good news about my kidneys and they are normal with no need to worry about them.

 

That was the good news. The bad news is that my blood cell counts remain stubbornly low and my GP and Rheumatologist think that I may be getting a build-up of blood somewhere inside my body. I don't have any obvious signs of blood loss when I go to the toilet, nor when I have had various tests so it is a bit of a mystery. Unfortunately, it means that I have to have another, more thorough, colonoscopy and an upper endoscopy too. The upper endoscopy appointment is on Wednesday, 6th March. Not sure when the colonoscopy will be but I'm not exactly impatient to get it done!

 

Dave

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7 minutes ago, davecov said:

exactly impatient to get it done

With you there mate. I had a sigmoidoscopy two weeks ago not quite as bad. But I do not like the endoscopy at all. BTW mine is Colitis. Not nice. I hope they get you sorted. Great news about your kidneys 

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Hi Dave, (and other sufferers) been following topic on n off for a while now mate, and if you ever want to chat with a fellow sufferer of pain, feel free to PM me and I'll call ya back. that goes for any other suffers too. Am serious about that.

Basically I've just been plugging on with a gradually getting worse bone disease called Ankylosing Spondylitis since my early 20's, though it was not until I was 30 I was finally diagnosed with this .... basically it means all the joints in my spine fused together, inc my neck, not only is it inconvenient and meant I had to give up my beloved Motorcycle riding, but give up car driving too.

I have for the most part, managed to fulfil a highly productive life since then and lived with my form of AS working at an Oil Rig construction yard at Ardersier N Scotland where I was able to do CNC milling, welding and other cool operated amazing machinery too ... however, all good production times come to an end, our N Scotland oil rig fabrication yards were shut down and I wont complain about why. Thats a highly political topic indeed.

So, after that went on to a nearby call centre for only a quarter of the wages I used to make in the oil industry and did 5 years at that, but towards the end, all that seated in front of a computer took its tool ... My Ankylosing Spondylitis was getting worse. rapidly.

They let me go in a kinda respectful way and I've been unable to work, ever since, no redundancy money from them, despite being there 5 years after the oil yards where I got good redundancy pay off from 25 years +.

Since then I had a terrible accident at home with a bad fall, my particular form of spine disease made my spine more brittle and easier to damage ... I have a tall Freezer with stuff stored on top of it, so got out a wee stool and managed to stand on it when it went out from underneath me, fell only a short distance but heard a snap, my brittle spine had snapped at the neck and fractured my cervical 6 and 7 vertebrae in clean breaks and as post surgery pics show below, had two titanium rods and 12 screws put in. its still painful, every single day and I have a dedicated microwave oven beside me, just for those neck wrap wheat bags I use constantly ... I get through 4 wheat bags a month, LOL, I get greedy and they over heat with repetitive use, sadly.

So subsequently and unfortunately, went into deep and dark depression for what seemed like Yonks ... eventually clawed my way back into life and started seeing my friends again and going to my beloved Music concerts ... and sadly that brings me to more recent times ... I too have type 2 Diabetes now and fear the original diagnosis was missed because of Covid Lockdown? perhaps? but iits deffo with me now and have been trying to control it with appropriate help, also my hips are long over due for replacement and am awaiting surgery any time soon after being on the waiting list for far too long and having successfully lost a stone as recommended, but damn ... I live in constant pain, cant sleep at night, its not good, its not fine ... I'm 64 now and 65 this July, cant even get my pension I worked hard for because its been pushed back to 66 for me.

Thinking about a Mobility Scooter in the short term, damn    I used to ride GSXR's ETC.

I suffer from Male Pride I guess, and need to learn to accept help, more readily.

Pain is an absolute curse ... Whats it all about Alfie?   Whats it all about?


 

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Ouch! The number of staples in your back outnumber mine by about 9 or 10 but mine were down at the L3 to L5 vertebrae. I looked as if somebody had put a razor blade in my toilet roll!

 

Unfortunately, I have been told that I need a similar operation to yours on my neck, with rods etc. Thankfully, my neck is bearable right now. I guess with everything else I have had to worry about recently, I forgot all about it. I only get reminders when I have to look over my shoulder when parking my car.

 

Dave

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Take care Dave, going in, anytime now for my right ... my side  Hip Opp total replacement, once that's done and recovered from, my other hip gets done too, at least after that I should be able to get around without walking sticks, will always have Ankylosing Spondylitis and fixed neck of course ... but at least after that I can roam again, walk ... because I cant just now and its not good being an ambitious wannabe outdoor person like my self.

Take care mate n Keep well :thumbsup2:

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  • 2 weeks later...

Crumbs, last night and after the morning's very intense, physiotherapy, went home and had a nap, decided ... enough was enough, and took my new fangled walking sticks down to the local pub for a pint for a test drive ... I mean walk :)

I knew I could make it downhill, if I took my time with my sticks ... and I did, but knew also I'd be scoffing at least two pints and need a taxi home ... short tho the distance is. In the end I had three pints of lovely cold Gunness and cuddled some lovely lady's and caught up with old mates too, it was exactly what I needed for my four wall live alone itis.

 

So then and about 9PM ish, called a taxi home, got home inside my house and promptly collapsed .. flat out on the deck in my hallway??  Fortunately I had my mobile phone on me and after several attempts trying to pick my self up, gave up. Called the emergency service and about  45 mins later, some guys came to help me from the NHS, excellent guys, highly professional in every way, they got me back on my feet, took health monitoring tests inc a blood sugar test at my finger tip, because I have the dreaded type 2 Diabetes now as well, and all was OK they said within limits. follow up appointments have been made because of this fall ... and its not the first sudden fall I've had ... Crumbs :(

Sometimes I wonder what its all about, Alfie ... but I plug on.

I'm not depressive, life can be tough. but its the tough that keep us going ... hopefully I will get my hips replaced soon, have quite a few bucket list thing to experience before I expire, ... Hope is everything.

Sincerely.

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Sorry to hear of your troubles. @One 48

 

I had my upper endoscopy on Wednesday and it seemed to be over before it had started, thanks to being sedated this time. It was discovered that I have a bit of irritation on my stomach lining. It was explained as possibly being caused by my Naproxen Rheumatoid Arthritis medication. A biopsy was taken as well so that a test can be carried out for Helicobacter pylori. I have never heard of it, but apparently it can be a cause of indigestion or stomach ulcers. I don't show outward signs of either problems but ulcers can also be caused by certain medications so hopefully the biopsy will help find the answer. I have to phone my GP next week to get the biopsy results. I have also been given a date for my second colonoscopy - oh joy! It is on the 25th March. It will be a more thorough procedure this time so I will be opting for sedation for that too. Aileen will have to take me to hospital and bring me home as I won't be able to drive myself after the procedure.

 

My Rheumatoid Arthritis is really bad today and I am unable to do any modelling as a result. That was thanks to Aileen and I being out a lot in cold temperatures yesterday, with the threat of snow showers hanging over us. We spent hours wandering around garden centres and travelling to various villages in the Borders. That was followed by some gardening and the assembly of a garden bench. Whilst knocking ten bells out of wooden dowels with a mallet was therapeutic in one way, it has caused big problem with my hands. I should be okay tomorrow though, if previous experience is anything to go by. Thankfully, with my medication routine well established, my RA flare-ups have become more of an irritant than the complete incapacitation of the past.

 

Hopefully, by the end of this month I will have all of the answers as to what is going on inside and the reasons for my anaemia is revealed.

 

Dave

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Candidates for conversion to Cyborg please form an orderly queue on the left. Honestly Guys, it would make life a lot simpler for quite a few of us. Keep the faith and battle on through. This is still better than the alternative. I'm sure we've all lost mates to the big C etc. You don't think about this sort of thing when you're younger. If only I'd taken more care of my body would I still have ended up this way? We'll never know. All the best. 

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Take care Dave ...

I probably shouldn't be doing this? Considering I had a freak fall and collapse last night. But disabled people are allowed to have a life too, so just mere hours ago for my efforts, went a looking at a last  minute deal at Glasgow Hydro for the Monday Judas Priest/Saxon/Uriah Heep show ... the god damn best of British Metal.

It took some smooth talking, even on the disability dedicated line, but after some negation ... got my 2 tickets for the Metal feast on Monday at Glasgow Hydro ... damn I sore needing this, its's gonna be fun ... Rock N Roll.

If there is anything I can say ... if you or loved ones have a disability, please let people know ... I hid mine for years, even from the doctors and medicals at work ...and I wish I hadn't.
 

 

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5 hours ago, One 48 said:

Glasgow Hydro for the Monday Judas Priest/Saxon/Uriah Heep show

It may not be what the doctor ordered but I hope you enjoy it

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On 3/9/2024 at 3:23 AM, One 48 said:

Take care Dave ...

I probably shouldn't be doing this? Considering I had a freak fall and collapse last night. But disabled people are allowed to have a life too, so just mere hours ago for my efforts, went a looking at a last  minute deal at Glasgow Hydro for the Monday Judas Priest/Saxon/Uriah Heep show ... the god damn best of British Metal.

It took some smooth talking, even on the disability dedicated line, but after some negation ... got my 2 tickets for the Metal feast on Monday at Glasgow Hydro ... damn I sore needing this, its's gonna be fun ... Rock N Roll.

If there is anything I can say ... if you or loved ones have a disability, please let people know ... I hid mine for years, even from the doctors and medicals at work ...and I wish I hadn't.
 

 

Man, I love Judas Priest.

 

Probably my favourite band, even ahead of AC/DC when Bon was at the helm.

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Meanwhile, back on planet Earth.

 

Another little update.

 

I would like to start by mentioning the great service I have been getting from my village health centre and the Borders General Hospital. Appointments are arranged very quickly and results of tests are returned fast too, sometimes the bloods results are phoned to me within eight hours of giving the blood.

 

This morning I popped into the health centre to pick up some medication and asked if it was possible for my GP to phone me at his convenience today, to discuss my endoscopy, biopsy and medication. Within an hour, my GP was on the phone. Very impressive. The good news is the biopsy was negative with no signs of Helicobacter pylori or anything else to worry about in the stomach. The irritation shown on my stomach lining is being blamed on Naproxen and I have been told to stop taking it. The replacement medication is Etoricoxib and my Omeprazole dosage is being doubled for the next four weeks to see if that settles the irritation, although I don't suffer any ill effects from it. In fact, I wasn't aware of it until the endoscopy.

 

For the past two days, my Rheumatoid Arthritis has hardly been noticeable compared to a few days ago. Then again, I haven't been doing anything silly following my exploits in my garden. Temperature and weather does play a big part in my symptoms and as things are gradually warming up, the flare-ups are lessening and I am able to do some modelling for longer periods.

 

As for my anaemia, still no word from my haematologist after the last blood samples, so the reason for that remains a mystery. Investigations are continuing as to what is causing my iron levels to remain low but while it remains so, I can't start on the Sulphasalazine. Over the next two weeks or so, I have to give another blood sample, undergo a colonoscopy and catch up with my GP again. Hopefully, it will be more good news, even if the anaemia problem isn't solved.

 

Dave

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Waiting waiting.hang in there,Mate  

I'm still waiting for biopsy results three weeks later. It could take up to two more I'm told. The lab must be snowed under. Not worried, but it would be good to know for sure. 

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Glad things are settling. Rheumatoid Arthritis is nasty, and in my nursing days I used to feel very sorry for the patients I used to see with it. Mrs T always reckoned it was one of the more challenging conditions to manage, no comfort to you I know.  I am developing a bit of osteoarthritis in my knees (probably work related), and although it sometimes is not fun. Slightly OT, my mum was a regular at BGH for various things, although her last admission was to the cottage hospital in Kelso. 

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  • 2 weeks later...

Last week I had a phone call from the hospital Rheumatology Specialist to say that they were very worried about my last set of blood tests. Not only am I anaemic but my white blood cell count is still very low too. I said that I was having a colonoscopy today (25th) which hopefully, would shed some light what is going on but alas, the colonoscopy didn't take place. Although I had taken the bowel preparation and fasted as directed, the doctor was unable to progress due to not having a clear enough route.

 

As that has happened twice in eight weeks, I said that I wouldn't like to do it for a third time. He said that it does happen quite a lot and he reassured me that they are going to arrange for a CT colonography instead. He said that should reveal exactly what is going on and he suspects polyps or a tumour. An upper endoscopy two weeks ago didn't reveal anything untoward "up top".

 

I can recommence my iron tablets now (had to stop for a week prior to the colonoscopy) which may help my anaemia long-term. Another blood test is scheduled for next week and so the investigations go on and on and on!

 

My RA has almost been forgotten over the past few days but I am afraid that I am suffering a big flare-up at the moment, thanks to the weather. That has limited my modelling time again.

 

Dave

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All the very best , Dave I had the CT scan a couple of years ago and they said I had a perforated colon. Well I didn't and if I had then  I surely would have been a lot more ill than I was. Which was a lot. TBF. But the scan is a lot easier than cameras. so fingers crossed for you. 

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  • 3 weeks later...

At last I can report a bit of progress in that I finally had a CT Scan (colonography) yesterday. After two failed colonoscopies already in the last couple of months, it was a relief to finally get a procedure done. I now have to wait up to ten days to get the results. Hopefully, that will reveal just what is going on inside and they can untangle the web of symptoms caused by a host of illnesses I am suffering. The main thing is that I will know one way or another if there is a tumour, polyps, bleeding within a body cavity or nothing at all.

 

I was also told this week that I may have hypothyroidism. A blood sample was taken for a T3 (Triiodothyronine) test and while I am just in the lower end of the normal range, I will have another T3 test later this year. As for my RA, the flare ups are reducing during the day but night time is still a problem. Still, things are a big improvement on how I was when it was diagnosed last August. I am still waiting for an end to my anaemia so that I can start on the Sulphazalazine immuno-suppressors.

 

I now have the luxury of having just over two weeks without needing a visit to my health centre or the hospital. Aileen and I are going away to Dunkeld next week for a break. It is a place we have been to a few times and by the time I get back home again I should have the results of the CT scan.

 

Dave

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