Hello from Brighton.

offthescale
offthescale Member Posts: 9
edited 15. May 2019, 08:21 in Say hello
Hello,

My names Dave, I’m 38 and I have been recently diagnosed with palindromic rheumatism.

Not really sure what to write, I am currently dealing with the repercussions of this. (Work, friends / family). What I have discovered that this for of arthritis is rare, can someone shed approximate numbers on this as feel this will help when talking to others.

Currently on Metroxate which has caused me to feel like I am on a rocky boat with sea sickness which is slightly tempered by cyclizine.

One of the main issues I face is finding a solution for pain (I know I am not the only one) However, due to having an operation on my oesophagus, have been told not to take any Nsaids at all.

Codine is like smashing me around the head with a sled hammer and leaves me completely it of it and has horrible side effects for me.

Just wondered if anyone used a kinder on the stomach solution? Other than that I will look into mindfulness for pain.

Finally have been recommended things like CBD and also to use Chondro Max by people who have friends etc with RA/OA.

Any help will be greatly received.

Thanks

Dave

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hello Dave. Welcome to the Versus Arthritis Online Community on behalf of the Moderators.

    I am sorry to hear of your recent diagnosis of Palindromic Rheumatism (also known as Palindromic Arthritis? PA). We definitely have people using this forum who have your form of Arthritis, but pain is pain and everyone on here can relate to that as well as difficulties with medication.

    Finding numbers is really difficult I presume you have already done some reading on the subject yourself, but just incase here are a couple of links which you might find useful:

    The first is Versus Arthritis:
    https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

    This one is from The Official Palindromic Rheumatism Society:

    http://www.palindromicrheumatism.org/

    Neither gives statistical information unfortunately.

    Medication issues are very common on here I will let the members give you their tips on how they cope. You are not alone in being unable to take Anti-inflammatories for all sorts of reasons. Some are able to use them in gel form though so that might be worth checking out.

    Please do join in wherever you like you are sure of a warm welcome.

    Ellen
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00
    Hello Dave,
    Sorry to hear that you are having rubbish time. I am also new here. I have OA and don't know about PA. For pain I find Tramadol less horrible than codeine although I try to only introduce it on bad days when I have a lot to do. I am very wary of addiction. I am interested in CBD oil too. I have been researching it today and there are an overwhelming amount of choices.

    Being new here myself I am still searching the forum and learning but just wanted to say hi.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I wanted to acknowledge your post but won't say much tonight because I've had a poor day. I am at the beginning of my 23rd year of psoriatic arthritis and 8th year of osteoarthritis and today sulking was the way to go! :lol:

    Pain is the bane of my life, I take four 30/500 cocodamol per day, they dull enough of the sharper edges to enable me to get on and I distract myself so I am not focused on the pain: I learned that thinking about it makes it worse. I'm off now as I need to sleep but I will be back to answer better. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks Ellen, Vicky and Daisy for reaching out.

    Ellen, thanks for the info, shame that the PR Facebook page hasn't been updated since 2011.

    Vicky, I will go an have a potter about the health shops near me and do some online research, happy to be a guinea pig.

    Daisy, sorry that you are having a bad day, but thanks for reaching out, its much appreciated as this is a strange journey to be embarking on.

    I think I am going to try some "Alternative" therapies, I have also been given some 15/500mg Co-Codamel, I felt sick, slept for about 14 hours and was slurring words like a have had 20 pints. Not good. I am so sensitive to things that having a can of cola at 7pm the other week and was up to 3am!

    Anyways, will head off later to the shops and report back and have a root around online.

    Has anyone tried?

    https://www.boots.com/revitive-ultrasound-therapy-10178369

    Thanks again,

    Dave
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Hello Dave.

    I do hope your search for help uncovers some therapies that will help you. Many are worth trying but it takes time to discover which, if any, are of help to you - regardless of their effects on others.

    I don't have experience of the ultrasound device you mention but I did have regular treatment with ultrasound from a private Physiotherapist. As the information suggests, the ultrasound waves don't penetrate deep enough to make any difference to joints but, in my case, they helped relax back muscles that had gone into spasm - a state akin to 'cramp' - to protect arthritic joints - and a really painful component of OA. (I'm a former sportsperson and still have particularly well-developed muscles, originally trained to facilitate performance in my particular sports.)

    There are other ways of maintaining good muscle tone but most depend on having someone available to apply the treatment. For me the most effective is massage and my husband was taught how to do this when I attended a Pain Management Programme. Many years on it remains my preferred treatment so I'm not tempted to purchase an ultrasound device. However, that's not to say that it would not do the job just as well but I'd advise trying before buying if possible.

    I'll be interested to know what you find.
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    Hey Crinkly,

    Thanks for replying, I think I can order a device and return if I don't like but will double check with Amazon, I get cramps too for my muscles too and wanted something to loosen up the areas.

    If anyone needs anyone pillow advice, id pretty much say I have tried every single one on the market, also wondered if anyone has tried this app?

    https://www.curablehealth.com

    Going to give it a whirl too.

    Thanks once again,


    Dave
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    You're more than welcome, offthescale, I'm used to the malarkey and to getting on with stuff even though it's the last thing I want to do.

    I'm not sure how much you have been told about the cause of the palindromic rheumatism but it is to do with your immune system going into overdrive, leading your body to attack itself. The methotrexate you are taking suppresses the immune system thus reducing disease activity. Gadgets that stimulate your muscles will not have any effect on the immune system so will not impact on disease activity and TBH will do very little to strengthen your muscles, that is far more effectively done by exercise: walking, swimming and cycling spring to mind.

    I keep cramps at bay by repeatedly standing on tiptoe when I'm making tea, cleaning my teeth, waiting for the hot water to come through etc. This keeps my Achilles tendons stretched and pliable. I worked for a while with a personal trainer who caused me more pain but of a different kind :lol: The work we did improved my overall stamina, I am still doing the things she taught me: I exercise every day but not as others might recognise it.

    As for the pain app I'm an old fashioned kinda gal who is capable of running her life without electronic help but I appreciate that younger people will like it. I think the Revitive range is little more than glamourised TENs treatment which, having had in physio, I know does nothing for me. TENs machines are available and often cheaper so maybe start with one of those. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00

    If anyone needs anyone pillow advice, id pretty much say I have tried every single one on the market

    Dave

    I went through all this. A few years ago with mattresses and then recently with pillows. Eventually, I settled on the Tempur Cloud pillow which is the only one I haven't had to adjust or throw off in the night. Which one did you settle on in the end?

    I have ordered some CBD oil online as the reviews I have read seemed to point to being better than high street oils. I will report back. But I think it is probably one of those things you just need to try for yourself as reports are mixed. I used trust pilot to choose.
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:

    As for the pain app I'm an old fashioned kinda gal who is capable of running her life without electronic help but I appreciate that younger people will like it. DD

    I enjoy your attitude and find it motivating. :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh crikey vickyp, no pressure then! I have arthritis but it does not have me, it does not define me. I am more than the disease, always have been, always will be.

    I too have tried many pillows, offthescale, and have ended up with an extra large Tempur shaped pillow under me bonce and a firm usual shaped Tempur under my knees or between my legs (I am a side-sleeper). The marital bed is now a superking made up of my side, three feet of firm and his side, three feet of medium: both have natural recyclable stuffing plus winter and summer sides. The next mattresses will also be two singles but ones that do not require turning. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Oh crikey vickyp, no pressure then! I have arthritis but it does not have me, it does not define me. I am more than the disease, always have been, always will be.
    DD

    You have become a role model DD :D

    I like a bed firm, my husband likes a soft mattress. Contrary to what the guys in the bed shops tell me I find that my joints hurt more if they 'sink' into a soft mattress. So I have a very firm mattress with a wool topper which takes some of the hardness away without any sinking. It took me ages to get the combination right for me. The H still considers it too firm but I ignore him because he sleeps whatever. :lol:

    My CBD oil arrived today Offthescale so I will let you know how that goes. Apparently, it needs to build up in the system so I will reserve judgement for a few weeks. I would be glad if it just brings sleep in a little easier though. I am sceptical but figure there is nothing to lose (apart from a bit of dosh) by giving it a go.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello again, offthescale, how are things going? I've been thinking of you and hope you are feeling a little easier in yourself. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:

    As for the pain app I'm an old fashioned kinda gal who is capable of running her life without electronic help but I appreciate that younger people will like it. DD

    Sorry but I think you maybe missing the point of the app. Its a app for chronic pain sufferers, that is made by neuroscientists, combining meditation, a written diary, education about pain and ways to communicate with pain and how to deal with it.

    Have used it for a couple of days and already found more relief than any of the pain relief medication handed out by GP's.

    I am not needing an electronic device to remind me but to aid as the app states, to treat pain you have to work on the brain, something my youngish mind why like to investigate instead of using pain killers to temporally mask the symptoms I want to get the cause.
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    vickyp wrote:

    If anyone needs anyone pillow advice, id pretty much say I have tried every single one on the market

    Dave

    I went through all this. A few years ago with mattresses and then recently with pillows. Eventually, I settled on the Tempur Cloud pillow which is the only one I haven't had to adjust or throw off in the night. Which one did you settle on in the end?

    I have ordered some CBD oil online as the reviews I have read seemed to point to being better than high street oils. I will report back. But I think it is probably one of those things you just need to try for yourself as reports are mixed. I used trust pilot to choose.

    Hey Vicky,

    I am about to try a flow sleeps,

    https://flowsleeps.com

    If that doesn't work, then will move onto the tempur.

    Please keep me in the loop regarding the CBD oil, I had a look and it seemed a minefield, would be good to know what you went for and how you are getting on.

    All the best,

    Dave
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello again, offthescale, how are things going? I've been thinking of you and hope you are feeling a little easier in yourself. DD

    All good thanks, a lot to digest and not discovered someone else n here with PR/PA so dealing with having full scale flare ups to not moving /in pain and then being okay even a few hours later.

    How are you doing? Hope you have a relaxing weekend.

    Bests

    Dave
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Not everyone who has arthritis is on here. Nowadays the majority who join never post again, it's only the Old Faithfuls that bother. It's hard to maintain conversations when people don't talk back, I think for many just getting it all out there is all they want.

    I am having a quiet day today as yesterday was busy (so I am recovering) and tomorrow is due to be busy (so I am preparing). Overdoing things yesterday has led to an increase of my OA pain but that's self-inflicted so no need for sympathy. It will escalate again tomorrow as I will be on my feet a great deal but as I'm hoping to sell loads of my stuff the gathering of filthy lucre will take my mind off it. :lol:

    My pain began in 1997, unlike toothache, muscle sprains, broken limbs and the like I don't regard it as useful pain because it cannot be dealt with. Pain is the body's alarm system, mine has rung continually and increasingly for 22 years and why is no mystery. I have a disease which damages my body, it's damage that cannot be repaired, it's repetitive and invasive. The PsA causes nflammation of the entheses, damaging the synovial lining of the joints, and affects the whole body. The OA inflammation is a different beast, more predictable, definitely more controllable and localised. The weather can trigger that as well as my doing silly things such as ascending and descending stepladders (which was yesterday's activity). Life became much easier between 2010 - 2012 when nothing was pain-free any more.

    I learned aged eight that focusing on what ails thee only makes it worse. Listening to my body and not overdoing things is, for me, a way of life because it has had to be but for someone who is new to all of this it must be very confusing, frightening and seem downright wrong. If your body has never failed you before it must be utterly mystifying why it is now. Mine has never worked and it never will. It's no big deal. I have always done what I could do with what I have, others have always been able to do much more because they had much more available, something they took (and take) utterly for granted. I do know to stop when I think I can do more but sometimes do get carried away. My peers are beginning to feel the viccistudes of their age (I am 60) and oh boy! they do not like it one little bit. I've been there, done that, just thirty years early is all! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00
    vickyp wrote:

    If anyone needs anyone pillow advice, id pretty much say I have tried every single one on the market

    Dave

    I went through all this. A few years ago with mattresses and then recently with pillows. Eventually, I settled on the Tempur Cloud pillow which is the only one I haven't had to adjust or throw off in the night. Which one did you settle on in the end?

    I have ordered some CBD oil online as the reviews I have read seemed to point to being better than high street oils. I will report back. But I think it is probably one of those things you just need to try for yourself as reports are mixed. I used trust pilot to choose.

    Hey Vicky,

    I am about to try a flow sleeps,

    https://flowsleeps.com

    If that doesn't work, then will move onto the tempur.

    Please keep me in the loop regarding the CBD oil, I had a look and it seemed a minefield, would be good to know what you went for and how you are getting on.

    All the best,

    Dave

    The pillow looks good Dave. I used one like this in the past and got on with it pretty well.

    The CBD oil I chose was 800mg Entourage Oil from website Love CBD. My toe, ankle, hips and sleep improved this weekend. My neck is still pretty sore. However, as Dreamdaisy points out OA is a different beast, it is often weather dependent and influenced by activity levels (either not enough or too much, I usually do too much). This week I have been very busy with work & family so I have not done much exercise outside of dog walking and the sun is shining. So I may just be moving into the summer good months. It has been a pattern for a few years now - in winter I think I am dying and in the summer I forget what I was making such a fuss about. :lol::lol:

    Hope everyone had a good weekend and that your selling stuff went well Dreamdaisy. Did you do a car boot?
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Please take care with cbd oil. Especially if you take prescribed or OTC meds.
    https://www.sps.nhs.uk/articles/cannabidiol-oil-potential-adverse-effects-and-drug-interactions/
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00
    Please take care with cbd oil. Especially if you take prescribed or OTC meds.
    https://www.sps.nhs.uk/articles/cannabidiol-oil-potential-adverse-effects-and-drug-interactions/

    Thank you Stickywicket. I had just made the assumption that as it could be purchased in stores such as Holland and Barrett that it must be fine. I have taken a look at your link and done a little more reading. Reports of elevated liver enzymes in some cases rather worrying especially as I already take prescribed and OTC meds that are possibly a little heavy on the liver anyway. More homework needed I think! Thank you again for bringing this to my attention.
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    vickyp wrote:
    I had just made the assumption that as it could be purchased in stores such as Holland and Barrett that it must be fine.

    So many people do. They also assume that because a product is 'natural' or 'herbal' then it is automatically safer than prescribed meds. Well, belladonna and digitalis are natural :lol: I'm with Dara O'Briain on this "Oh, herbal medicine’s been around for thousands of years!’ Indeed it has, and then we tested it all, and the stuff that worked became ‘medicine’. And the rest of it is just a nice bowl of soup and some potpourri.”

    There are no standards for such things. There are some voluntary ones but nothing compulsory. Here's what the U.S. NIH says https://ods.od.nih.gov/HealthInformation/DS_WhatYouNeedToKnow.aspx

    I apologise for being so blunt last night but I was about to head for my bed when I saw your post and I recall one forum user writing that they'd found some supplement that was really good and all natural. A little research showed that the 'natural supplement contained, among other things, an anaesthetic, a steroid and an antibiotic. No wonder it worked :lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • vickyp
    vickyp Member Posts: 27
    edited 30. Nov -1, 00:00

    Well, belladonna and digitalis are natural :lol:

    :shock: :lol:
    I apologise for being so blunt last night but I was about to head for my bed when I saw your post and I recall one forum user writing that they'd found some supplement that was really good and all natural. A little research showed that the 'natural supplement contained, among other things, an anaesthetic, a steroid and an antibiotic. No wonder it worked

    I didn't experience your post as blunt. I experienced it as helpful reminder to not make assumptions and do my homework. A bit like the 'natural supplement' you mentioned some of the investigation revealed that not all CBD oil is as free from THC, the stuff that makes folk high, as we might be led to believe. That might account for my happy mood. :lol::lol:

    Seriously though, I appreciate your posting and have heeded your words. Interesting link about dietary supplements too - since the OA diagnosis I have been taking them by the handful. Again without much homework.
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Thank you. As a general rule of thumb regarding all meds and supplements and their potential interactions, pharmacists are usually the best informed people to ask and are usually very happy to help.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • offthescale
    offthescale Member Posts: 9
    edited 30. Nov -1, 00:00
    vickyp wrote:

    Well, belladonna and digitalis are natural :lol:

    :shock: :lol:
    I apologise for being so blunt last night but I was about to head for my bed when I saw your post and I recall one forum user writing that they'd found some supplement that was really good and all natural. A little research showed that the 'natural supplement contained, among other things, an anaesthetic, a steroid and an antibiotic. No wonder it worked

    I didn't experience your post as blunt. I experienced it as helpful reminder to not make assumptions and do my homework. A bit like the 'natural supplement' you mentioned some of the investigation revealed that not all CBD oil is as free from THC, the stuff that makes folk high, as we might be led to believe. That might account for my happy mood. :lol::lol:

    Seriously though, I appreciate your posting and have heeded your words. Interesting link about dietary supplements too - since the OA diagnosis I have been taking them by the handful. Again without much homework.

    Hey Vicky,

    How are you getting on? You have gone for a high dose, I have seen that you should start low and build up, but if it's working, it's working.

    Think I am going to start at 250 with these and see how that starts out. How long is yours expected to last?

    https://www.healthspan.co.uk/products/high-strength-cbd-oil-dropper-275-250mg-10ml#/?pack size=250

    Hope you are well,

    Speak soon


    Dave
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Think I am going to start at 250 with these and see how that starts out. How long is yours expected to last?

    https://www.healthspan.co.uk/products/high-strength-cbd-oil-dropper-275-250mg-10ml#/?pack size=250


    Healthspan is a reputable company which worked with Arthritis Research UK before the latter and Arthritic Care merged to become Versus Arthritis. It's worth reading all the blurb on this page as it shows not just how trustworthy they are but all the stuff to guard against with other sellers. In particular it says "If you’re taking any prescribed medication, please consult your doctor before use."
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran