Arthritis?

[Bob Williams]

Ed P wrote:

PlaneMan wrote:

Had the gastroscopy earlier today and it was horrible.

Yep, that is why I always ask for sedation for my biannual check. Claiming that the procedure causes involuntary larynx spasms helps to get you on the sedation track.

Exactly what I do Ed!

Nolan, thanks for reminding me of that great Python clip. Beeps? In my regular Wednesday Chemo ward visits, I sit lounge attached to a machine that beeps, boops and blips in several Machine Languages. At the same time, there may be as many as 15 other victims patients whose machines also beep, boop and blip. When one machine stops, another two or more will take over. We make jokes between us about the music we could produce, if only the manufacturers would make them b-b-b in scales.

Today I had a clinic visit, was weighed and have lost another 1.5 Kg. I thought as much, as my new 34″ waist trousers now need a belt. Wonder if the NHS will give me a clothing allowance???

When the Thought Police arrive at your door, think -
I'm out.

[PlaneMan]

I’ve had a horrible, busy week, lot’s of appointments and being in unfamiliar places with unfamiliar people.

I have gastritis and an antrum erosion. GP wasn’t overly concerned but said he’d wait until the results of the 4 biopsies came back.  8 weeks usually. Now on lansoprazole.

Also had to endure an interrogation by the SS. Or as the DWP puts it an assessment for P.I.P. I expect my disability benefits to be stopped while I fight them again. It’s what they do.

Good news is my Integrated Autism Service support worker is very good and has offered help with the almost inevitable denial of P.I.P. Apparently they have become quite the experts on the subject. Also she is going to have a word with the nutritionist and see if they can come up with anything that might help with my stomach issues.

Rheumatology consultant on Thursday, the consultant is very good but his consultant in training is far prettier. ?

[Richard]

Sorry, I can hear the edge of depression in your writing and yes, it has not been an easy time of things. I have ‘graduated’ from Lansoprazole to omeprazole a little while back in an effort to control by stomach in its upper reaches. I cut it in half that way because things in other areas are still out of their and my comfort zone. I do not have the advanced levels of arthritis you have, though as one doctor said I do have it everywhere before adding, ‘everyone has some evidence of arthritis by your age, with some bits worse than others’. It can be an autoimmune problem which might tie in with the stomach issue. Though, Asperger’s is associated with malabsorption of some nutrients, e.g. Zinc and in some cases by self screening of food stuffs that the body would benefit from consuming. This can be a real issue for some, we have a disabled daughter whose food fads are like a religious mania at times.

I have mild arthritis in several fingers and the characteristic nodules on several knuckles with mild reddening especially in cold weather. The Naproxen I take appears to have limited success in controlling the various inflation sites and might well play a part in the digestive disorders, but genetics might also be in play. They played a major part in my needing one knee operation two spinal operations and five hand operations, another finger is now showing signs of wanting to joint that party but I keep trying to tear up its invite.

I understand it is depressing and a struggle against the daily round of pain and the cycle of depression that it causes. We have my exercise plan, sorry eldest daughter’s dogs with us this weekend not just for the week, the combination of a cold and the almost freezing temperature outside meant that their walk was severely truncated. As my weight had already edged up this morning, it was a bad start to the day. I have now put off taking my wife’s car out for its weekly keep it happy run. The dogs are now doing what older dogs do best on chilly mornings, sleeping in their baskets, having decided they were too tired to bother much with food. That will change as the day warms up and I will regain some of my lost activity points before night falls once more. Now to deal with the rest of my morning breathing medical schedule to keep that source of reactions at bay, once the music starts the roundabout just goes round and round.

Good luck with the PIP star court machinations; a qualified ally can be a great help in such cases

[Ed P]

If you get to see your gastroenterologist again, it might be interesting to raise the subject of faecal transplant and see what he/she says. A bad balance of gut bugs is starting to get blamed for a whole range of things including autism!

[PlaneMan]

Thanks both.

Ed, the more I read and learn about autism, inflammation and stomach issues the more I’m amazed that they are all treated as separate issues. I’m glad that there are people out there trying to change the status quo.

The methotrexate I take is meant to subdue inflammation but it clearly doesn’t in me. The GP was very puzzled by that.

[PlaneMan]

I’ve now seen the consultant rheumatologist and after much poking and prodding and discussion he’s agreed to switch me to the injection form of methotrexate. I wanted to try something else but he explained his hands are tied due to cost, methotrexate is relatively cheap in oral form, more expensive in injection form and the other drugs are much more expensive so they try the cheapest and work their way through until they admit you need the more expensive stuff.   I should have an appointment with the rheumatology nurses to explain it all and show me what to do ‘urgently’.

The consultant also confirmed that I do have arthritis in my hands and other joints, he said that some of my joints showed significant wear and he could feel nodules on some of my finger joints.

[StevieP]

Not directly connected to your problems PM, but I have been given this http://bit.ly/2DZXEOY to combat my Hemolytic Anemia. I have a monthly dose 25% of that given to rheumatoid arthritis sufferers. I have had three doses so far and supplemented by 4 sub-cut injections per week my bloods have improved dramatically, in fact no more blood or platelet transfusions since the first infusion. It also, in my case, works out to be a lot cheaper. Not specifically licenced for that use but my consultant obtained permission for it to be used. Don’t know if you would be suitable but it might be worth asking

[PlaneMan]

Stevie, thanks for that.

Next consultant appointment is almost exactly 6 months time, which should give enough time for everything to settle. That’s amazing in itself, they are usually 9 months + because of the lack of consultants.

Glad it’s working for you.

 

[PlaneMan]

Saw the GP again today for a follow up about how I’m doing on the lansoprazole. Thankfully that’s helping with the stomach issues but it’s still not great.

She noticed that my some of my finger joints were swollen and also commented on the cracked skin on my hands. I now have lotions for my hands due to possible eczema. Hydrocortisone for a fortnight, once a day, and Diprobase 3 times a day for as long as needed.

The way I’m going I’m going to need a fugging spreadsheet to keep tabs on all my meds!!!

[Ed P]

If taking ppis cause ~4am stomach pains then adjust your eating habits and do not consume carbohydrates after roughly 1800 hrs. (As explained to me by the specialist your body goes into starvation mode in the early hours of the morning, but ppi medication results in a more than usual amount of undigested material hitting the lower intestine where it ferments and the gases produced cause pains.)

Unfortunately carbohydrates include beer! I was prescribed lomatil (it slows things down, allowing daytime digestion) for the times when over-indulgence could not be avoided – but only for use on rare occasions!

[PlaneMan]

Thanks ed.

I don’t get early morning gut pain, it’s as I eat and the day progresses.

The GP agrees that’s it’s probably a combination of the methotrexate (hence the switch to injections) and stress. I don’t deal with stress in the same way as ‘normal’, whatever that means, people. I have no problems driving in heavy, congested, traffic, not stressed at all, in fact I mostly like it, but put me in a waiting room anywhere, no matter how quiet and I’m very stressed.

That’s probably due to the fact that in my car I’m in my little world. (Not literally, OFC). In a waiting room I’m in the real world. Autism is never boring, that’s for sure.

[Ed P]

PM this article on placebos is interesting. It goes some way towards explaining why folk on the Autism spectrum find many medications do not work. Logical folk perhaps need more convincing that something will work.

Although the article does not cover it, the nocebo (negative placebo) effect is much stronger. My father spent many years in West Africa and he used to recount the evil effects that a ‘*witch-doctor’ could achieve by putting a hex on someone.

*wrong word but I cannot remember the dialect word he used.

[PlaneMan]

That’s an interesting read Ed, thanks.

I’ve always been of the opinion that for a curse to work you have to believe in it, it then sets the seed in your mind that something is going to happen and you then worry about it, which makes you more susceptible to illness.  Also you probably aren’t paying attention properly which makes accidents more likely.

I found this article a little while ago, it makes sense to me and might explain why I can tolerate a lot of pain which is handy right now.

[Bob Williams]

No offence to anyone here in pain and distress: we are different and individual. I hope we all find a way to deal with our situations and I particularly admire Nolan’s approach to his problems, which is to get on his bike and put it behind his wheels. Good luck and good health to us all.

I apparently have a high resistance to pain, probably after years of Taoist meditation. Which is a very good thing, after the years of operations and my many medical conditions, causing the removal of organs and parts which I had always believed were necessary to my survival: shows how wrong one can be! ???

Placebos I remember from my mam, who would take anything the doc waved at her, and my dad, who was known to dump down the loo anything he did not believe was worth throwing down his neck. Which was anything at all apart from stuff proven to help reduce pain, and the numbers of those prescriptions were counted on the hands of a man with 2 fingers and a thumb missing. I asked the doc once why mam only got 4 hours of sleep out of heavy sleeping tabs. Discounting Patient Confidentiality because I had by then  taken over much Care responsibilities, he said “They have not been real for some years. I gave her a placebo: you understand that? – “At my nod, he continued, “She believes it gives her sleep. I had reached the point at which I believed it was dangerous to continue the scrip, because of her acute Angina. So I was granted permission to give her a recognised placebo.” I think that old family GP of many decades, would have called that a ‘Win win’ situation today.

I knew him from a baby, he was Old School: Monday saw him issuing Sick Notes en block to the usual half-dozen miners who never did fancy work after a hard weekend’s Play. He did this quickly so that he could return to seeing genuinely ill people and everyone accepted it. None of my working mineworker relatives ever did that.

When the Thought Police arrive at your door, think -
I'm out.

[PlaneMan]

Finally going to get switched over to injections for my methotrexate, that happens in about 3 weeks time. That’s going to be interesting as they are self administered. Need sharps training and all the paraphernalia that goes along with it. Hopefully then my stomach will start getting better.

Also just had a text from the health board saying I have a letter waiting. One link followed and the included PIN and some personal details inputted and I have .pdf letter to view. At last I have a pain clinic date, new years eve at 11pm, yes pm, that’s what the letter says. It must be am but I’ll check anyway. Only taken about 4 1/2 months which is better than the 6 months + I was warned it would take.

[PlaneMan]

Just had a P.I.P. decision.

Amazingly, nothing changes. I was expecting a fight for upto a year. Huge relief.

One less thing to worry about, well, until the rules get changed again.

[JayCeeDee]

Congrats – that’s a nice early Christmas present from an unexpected source – DWP!! Well done.??

[PlaneMan]

Thanks JCD, it really was a nice surprise.

[Bob Williams]

Great news Nolan, you were due a win!

When the Thought Police arrive at your door, think -
I'm out.

[Bob Williams]

Great news Nolan, you were due a win! Just in time for Christmas too.?

When the Thought Police arrive at your door, think -
I'm out.

[Author]

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