Every now and then I need to vent folks, takes away some of the anger I feel.
I was discharged as medically unfit from the services back in 2000. I had just been diagnosed as diabetic, adding to that was spondylolisthesis, Spondylolysis, disk rupture, cervical spondylosis and stuffed shoulders. Then two years ago I was diagnosed with RA and just recently that diagnosis was changed to PsA Mutilans. Capping it off a couple of months ago was lung cancer.
Initially, when I presented the RA only affected my forearms, my GP thought it PMR and so started me on corticosteroids. They had no affect other than causing itchy skin and a moon face. Corticosteroids can't just be stopped, they have to be tapered, and this my friends is great fun. In two years I have managed to taper from 15 mgms down to 4.75 mgms At this time I'm tapering by 0.25 mgms ever two to four weeks, taper the dose too quickly and the pain is unbelievable.
The Rheumatologist I see started me on Methotrexate initially which didn't work and so he started working his way through the other DMARDS; unfortunately, they all had the same effects - itchier skin and bigger rashes, but absolutely nothing else and so, I was started on a biologic drug called Actemra. This of course also didn't provide any relief and so I started working my way through the biologic drugs. Biologic drugs are extremely expensive and so our govt has rules pertaining to their use, and how many can be trialed before they wipe their hands of you. For RA it is five, for PsA it is three. I worked my way through three of the RA biologics, all to no avail of course, the Rheumatologist then changed his diagnosis to PsA and I was started on another biologic which specifically targets PsA; unfortunately, it appears to have the same affect as all the others, just itchier skin.
In desperation I turned to alternative meds and diets. Curcumin, MSM, Fish oil, vitamins, blah, blah, blah, you name it, I've tried it. Next came diet, no dairy, no meat, no sugar (difficult when a diabetic), no processed. And after that deleting inflammatory foods, and after that adding anti-inflammatory foods, you guessed it - zilch!
These meds have many side affects, for me it's itching and rashes, since starting on these meds itching and rashes have been my constant companion. At one time the itching morphed into urticaria which stayed with me for months and months. If you think you have suffered bouts of itchy skin, try urticaria, it is absolutely wonderful. With itching of course always comes scratching and now being in my mid to late 60s I bruise very easily, so you can imagine the picture I now present.
RA/PsA are terrible diseases that attack the body, not just joints but also the organs, heart, lungs and so on. A scan I did some time back picked up a lump in my right lung and after further scans i was diagnosed with lung cancer; so, underwent surgery the surgeon removing the superior and middle lobes of the right lung - about 60% in total. Of course this didn't all go to plan: I was supposed to be in ICU for two days followed by four in the ward. Unfortunately, there was a leak so I spent two weeks in ICU connected to a vacuum, followed by a couple of days in the ward. There was a great benefit to this op though, after the op I was on bucket loads of pain pills and so, the pain from RA/PsA was greatly reduced. Now I've recovered and back to normal, albeit a little breathless at times, the pain from RA/PsA has returned.
What's it like living with RA? Imagine every time you lift something, turn a doorknob, shake hands, scratch your behind, someone is pounding up and down your arms, shoulders, neck and hips with a sledgehammer. In short, I have largely lost the use of my arms/hands. Very annoying when a boogy wants to be noticed.
I was a weightlifter/body builder for quite a few years in my youth, and although not having thrown any weights around for many years I managed to exercise and stay in pretty good shape, maintaining a fairly muscular physique. With RA comes atrophy, indeed the disease was once referred to as the muscle wasting disease. In two years I've lost 4" from my biceps, nope I'll change that to arms, I no longer have a biceps.
One of the more annoying things about RA is I no longer shake hands with people as it is quite painful. When offered a hand I usually excuse myself by saying, sorry I have RA and can't shake your hand. The standard delivery from all is Oh, I have arthritis too, no big deal, get on with it! Best one of all though comes from my wife's son 'How's things, on the mend?'
OA is a disease caused by overuse/damage to joints and can be managed quite successfully with DMARDS and resting the affected joints. RA/PsA on the other hand is an autoimmune disease with no known cause and no cure. It affects, joints, ligaments, tendons, bursas, muscles, inner organs, et all. I have both, believe me OA is a walk in the park.
The wife suffers through this disease with me too, if she picks up the phone and hears heavy breathing she doesn't know whether she should report it to the police or just blow me a kiss. Could work out well for the perverts out there!
aussie_paul said
03:29 PM Aug 6, 2017
So sorry to hear that toglhot.
Aussie Paul.
-- Edited by aussie_paul on Sunday 6th of August 2017 03:32:43 PM
hako said
07:47 PM Aug 6, 2017
I certainly admire your attitude and I don't know how you "keep it up". Thanks for the post - I've learnt quite a lot. I won't say I'm sorry for your bad luck because I know that's not what you want.....I'll just say thanks for sharing it with us.
Regards
Possum3 said
07:55 PM Aug 6, 2017
Tony, Most of us old farts suffer from OA and a few with PsA - but you seem to have got the Devil's dose - I cannot offer any wise words or possible compounds to relieve your suffering. All I can do is Pray that you find the magic bullet that allows you relief.
You're such a young bugger as well- It somehow seems that those who get it at a younger age seem to get it worse.
Take care of yourself and your wife, as you are right they suffer too. Sometimes in silence (sometimes not LOL).
jules47 said
11:47 PM Aug 7, 2017
Hi toglhot - not good to hear of your ill health - this is a copy of a post I this health and wellbeing section from someone who has found some relief from pain - my theory is - try it - it might work, if you don't try you don't know - I have no connection with this company, just a belief in their products.
OK it's time for me to say a enormous thank you which doesn't happen very often, and that is to JULES, who I reckon most people in here are familiar with. I'll start at the beginning. I am a 77 year old bloke who like most people at this stage suffer with Arthritis, particularly in my right shoulder, elbow and both thumbs. I mentioned it in "Health & Wellbeing" maybe about 3 months ago and Jules directed to another lady in that page and one thing lead to another. For a paltry $50, I purchased a liter of Manganese oil and 2 spray bottles. I started off with my wife rubbing my right shoulder 2 & 3 times per day and after about 8 days I said to my wife, "I can't believe it but I have been pain free for the last couple of days". So at this stage I started taking a bit of notice of things, and started rubbing the oil myself into my shoulder, elbow and thumbs a couple of times a day and life is a dream. About 2 weeks ago because of distractions I forgot to rub it in for 2 days and sure enough, I was back in the pain cycle because. To cut a long story short, I have absolutely no pain at all and am rubbing it in myself once per day and life is a dream. Now I am a retired Mine Manager not a Medical Person, and my good fortune may not apply to everybody, but to any people perusing these pages in a similar position and age as myself I would strongly recommend rubbing Manganese oil into you sore spots on a regular basis. If it is any help I would suggest you put 4 or 5 squirts onto your hand and rub it in, do that twice per session. Do that to your painful spots and assess the situation after 2 weeks of continual treatment. After that you can modify the regularity and volume to suit your personal situation. I am now going to give the oil the big test next, as I suffer with Peripheral Neuropathy which gives me burning stinging feet. Because it is nerve damage, and most pain killers don't help with nerve pain, so watch this space. I wait with baited breath to hear your replies in the next 4 to 6 weeks after starting. Once again we are all different and I am a natural born pessimist and on cloud nine, so there is hope for you also.
Every now and then I need to vent folks, takes away some of the anger I feel.
I was discharged as medically unfit from the services back in 2000. I had just been diagnosed as diabetic, adding to that was spondylolisthesis, Spondylolysis, disk rupture, cervical spondylosis and stuffed shoulders. Then two years ago I was diagnosed with RA and just recently that diagnosis was changed to PsA Mutilans. Capping it off a couple of months ago was lung cancer.
Initially, when I presented the RA only affected my forearms, my GP thought it PMR and so started me on corticosteroids. They had no affect other than causing itchy skin and a moon face. Corticosteroids can't just be stopped, they have to be tapered, and this my friends is great fun. In two years I have managed to taper from 15 mgms down to 4.75 mgms At this time I'm tapering by 0.25 mgms ever two to four weeks, taper the dose too quickly and the pain is unbelievable.
The Rheumatologist I see started me on Methotrexate initially which didn't work and so he started working his way through the other DMARDS; unfortunately, they all had the same effects - itchier skin and bigger rashes, but absolutely nothing else and so, I was started on a biologic drug called Actemra. This of course also didn't provide any relief and so I started working my way through the biologic drugs. Biologic drugs are extremely expensive and so our govt has rules pertaining to their use, and how many can be trialed before they wipe their hands of you. For RA it is five, for PsA it is three. I worked my way through three of the RA biologics, all to no avail of course, the Rheumatologist then changed his diagnosis to PsA and I was started on another biologic which specifically targets PsA; unfortunately, it appears to have the same affect as all the others, just itchier skin.
In desperation I turned to alternative meds and diets. Curcumin, MSM, Fish oil, vitamins, blah, blah, blah, you name it, I've tried it. Next came diet, no dairy, no meat, no sugar (difficult when a diabetic), no processed. And after that deleting inflammatory foods, and after that adding anti-inflammatory foods, you guessed it - zilch!
These meds have many side affects, for me it's itching and rashes, since starting on these meds itching and rashes have been my constant companion. At one time the itching morphed into urticaria which stayed with me for months and months. If you think you have suffered bouts of itchy skin, try urticaria, it is absolutely wonderful. With itching of course always comes scratching and now being in my mid to late 60s I bruise very easily, so you can imagine the picture I now present.
RA/PsA are terrible diseases that attack the body, not just joints but also the organs, heart, lungs and so on. A scan I did some time back picked up a lump in my right lung and after further scans i was diagnosed with lung cancer; so, underwent surgery the surgeon removing the superior and middle lobes of the right lung - about 60% in total. Of course this didn't all go to plan: I was supposed to be in ICU for two days followed by four in the ward. Unfortunately, there was a leak so I spent two weeks in ICU connected to a vacuum, followed by a couple of days in the ward. There was a great benefit to this op though, after the op I was on bucket loads of pain pills and so, the pain from RA/PsA was greatly reduced. Now I've recovered and back to normal, albeit a little breathless at times, the pain from RA/PsA has returned.
What's it like living with RA? Imagine every time you lift something, turn a doorknob, shake hands, scratch your behind, someone is pounding up and down your arms, shoulders, neck and hips with a sledgehammer. In short, I have largely lost the use of my arms/hands. Very annoying when a boogy wants to be noticed.
I was a weightlifter/body builder for quite a few years in my youth, and although not having thrown any weights around for many years I managed to exercise and stay in pretty good shape, maintaining a fairly muscular physique. With RA comes atrophy, indeed the disease was once referred to as the muscle wasting disease. In two years I've lost 4" from my biceps, nope I'll change that to arms, I no longer have a biceps.
One of the more annoying things about RA is I no longer shake hands with people as it is quite painful. When offered a hand I usually excuse myself by saying, sorry I have RA and can't shake your hand. The standard delivery from all is Oh, I have arthritis too, no big deal, get on with it! Best one of all though comes from my wife's son 'How's things, on the mend?'
OA is a disease caused by overuse/damage to joints and can be managed quite successfully with DMARDS and resting the affected joints. RA/PsA on the other hand is an autoimmune disease with no known cause and no cure. It affects, joints, ligaments, tendons, bursas, muscles, inner organs, et all. I have both, believe me OA is a walk in the park.
The wife suffers through this disease with me too, if she picks up the phone and hears heavy breathing she doesn't know whether she should report it to the police or just blow me a kiss. Could work out well for the perverts out there!
So sorry to hear that toglhot.
Aussie Paul.
-- Edited by aussie_paul on Sunday 6th of August 2017 03:32:43 PM
Regards
You're such a young bugger as well- It somehow seems that those who get it at a younger age seem to get it worse.
Take care of yourself and your wife, as you are right they suffer too. Sometimes in silence (sometimes not LOL).
OK it's time for me to say a enormous thank you which doesn't happen very often, and that is to JULES, who I reckon most people in here are familiar with. I'll start at the beginning. I am a 77 year old bloke who like most people at this stage suffer with Arthritis, particularly in my right shoulder, elbow and both thumbs. I mentioned it in "Health & Wellbeing" maybe about 3 months ago and Jules directed to another lady in that page and one thing lead to another. For a paltry $50, I purchased a liter of Manganese oil and 2 spray bottles. I started off with my wife rubbing my right shoulder 2 & 3 times per day and after about 8 days I said to my wife, "I can't believe it but I have been pain free for the last couple of days". So at this stage I started taking a bit of notice of things, and started rubbing the oil myself into my shoulder, elbow and thumbs a couple of times a day and life is a dream. About 2 weeks ago because of distractions I forgot to rub it in for 2 days and sure enough, I was back in the pain cycle because. To cut a long story short, I have absolutely no pain at all and am rubbing it in myself once per day and life is a dream. Now I am a retired Mine Manager not a Medical Person, and my good fortune may not apply to everybody, but to any people perusing these pages in a similar position and age as myself I would strongly recommend rubbing Manganese oil into you sore spots on a regular basis. If it is any help I would suggest you put 4 or 5 squirts onto your hand and rub it in, do that twice per session. Do that to your painful spots and assess the situation after 2 weeks of continual treatment. After that you can modify the regularity and volume to suit your personal situation. I am now going to give the oil the big test next, as I suffer with Peripheral Neuropathy which gives me burning stinging feet. Because it is nerve damage, and most pain killers don't help with nerve pain, so watch this space. I wait with baited breath to hear your replies in the next 4 to 6 weeks after starting. Once again we are all different and I am a natural born pessimist and on cloud nine, so there is hope for you also.
If anybody wants to jump the gun,
Go to::
Katherine
Magnesium Oil by Treasured Earth
treasured_earth@hotmail.com
Boy I hope I have gone too far!!!!!!