Any tips on joint pain?: Hey everyone, What... - Behçet's UK

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Any tips on joint pain?

Denise-- profile image
27 Replies

Hey everyone,

What do you do for joint pain? I am trying to avoid medication because every time I take it, I get worse after stopping the course of medication. My ankle has 'blown up' again and it's killing me! I cannot do anything and I start full time work as a waitress in 3 weeks. I don't want to be crippled going in but I also don't want to be on meds either. Any time I go on meds I am so spaced and cannot function properly (especially at work!)

Any natural alternatives ...help or tips?? :(

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Denise-- profile image
Denise--
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27 Replies

Hi Denise, this has been discussed a few times so I am sure you will get some good tips.

Regarding medication, when you say stopping the course do you mean you are given something specifically for the joint pain over a short period? there is so much available - have you tried everything? You may not have found the right thing for you yet. Some people take long term slow release meds, like nortriptyline, to take the edge off and keep things reasonably under control, and long term immune surpressants which can help to keep inflammation down. I assume the fact you are given this short term med means whoever is prescribing it knows what the cause of the pain and swelling is?

The treatment could vary depending on cause, eg blood vessels, fluid retention etc.

Things that help can vary from heat pads, ice packs, warm baths, elevation, exercise, massage, injections - it might be worth seeing a physio for advice about walking, resting and so on.

Denise-- profile image
Denise-- in reply to

I was given colchicine and prednisolone for 2 weeks before.

My new rheumy (seen him once) is now querying if it is Behcets or not so I don't want to go on meds if I am taking the wrong ones for me! After the colchicine I felt terrible. I had pain in all of my joints. I am just not myself on medication and am trying to keep away from it. I'm doing a healthy diet now and taking wheatgrass so I'm hoping it will pay off soon......the docs look at me like I'm mad haha

andreafm profile image
andreafm

Have a lovely regular soak in epsom salts and add essential oils such as Lavender or Cedarwood or spruce. Lemon Oil is specificly for joint pain and swelling - but can be sensitive to sunlight [or sunbeds]. No chance of sunburn at the moment ;)

Soak for about 15mins and when you get out wrap in a warm dressing gown and let it dry on you

The epsom salts will help relax muscles, reduce toxins and reduce nerve pain and swelling and the oils will soothe the pain...and smell nice of course.

Great before bed

Andrea

goodlife profile image
goodlife

The epsom salts are a winner and they are as cheap as chips from Boots......Denise I get a lot of comfort from an electric blanket (over) and an underbllanket on the bed tho its a bit tricky at work, lol...I must admit I will try any drugs thrown at me as it gets me down rotten.

Love JIll

andreafm profile image
andreafm

The other thing I thought of is Glucosamine Gel which helps joint and muscle pain. You can get it is tubes from chemist. I actually by a giant tub of 1Litre from horse suppliers as it is much cheaper....don't laugh, it's much cheaper and works wonders.

Andrea

goodlife profile image
goodlife

Andrea I wish I could laugh but my ass is nigh on the size of a horses rear.....and anything that works and saves the pennies has to be a winner............so I will send you a rosette in the post.

naaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyy more joint pain :-)

xandii profile image
xandii in reply to goodlife

Mine too ! Last time I bent over someone put 50p each way on me. big hugsxx

goodlife profile image
goodlife

Nice one xandii.... lol

andreafm profile image
andreafm

Glad I've manage to create some laughter here

Here's my contribution today

Q: Where do horses go when they're sick?

A: The horsepital

Boom Boom :-D

goodlife profile image
goodlife

Ha ha I must be high on life the last couple of days.....but yes Andrea its so good to laugh, isn't it?

Charms1 profile image
Charms1

thank you for the epsom salt idea, i have not tried yet; also thank you very much for the grin! : )

devonshiredumpling profile image
devonshiredumpling

Hello my lovely! Good to see you here x

devonshiredumpling profile image
devonshiredumpling

My freelance writing job - the one I had to give up 6 months or so ago - was writing a medical marijuana site, which I did four around four years. I learnt a lot

I have no strong feelings one way or the other regarding the use of cannabis but the evidence in favour of its benefits in helping medical conditions is vast and continues to grow.

For proper medical use it's no use going to the local supplier - unless s/he really knows her stuff. Strain and breed are of vital importance and you are unlikely to get the requisite quality from 'the man on the street.'

SuenMike profile image
SuenMike

When I was in my 'hypochondria' state (i.e. no diganosed with BD and made to feel like a waster of my GP's time) I tried to grin and bear the pain and never found anything to touch it. This was before dicoflenac was available over the counter, by the way.

I would have given my eye teeth to have got my hands on a tube of Voltarol gel. This is quite a good item to have around even now I have been diagnosed.

When eventually I got my diagnosis, I was sent to a pain clinic. They persuaded me that it was not 'wimpy' to accept that I needed help. They gave me whole load of psychological gumpf (my OH is a professor of psychiatry, so that was hilarious!) but prescribed some Tramadol of which I could reduce the dose of as I felt proper! Giving me an actual control was an eye opener into how this clinic worked. They also prescribed trans-dermal patches (fentanyl) which have been a saviour. I currently take none of the Tramadol and although I have a higher dose patch, it is still a small dose.

Does your consultant have connections to a pain clinic. I would ask, because they helped me loads. I think that when the rub comes, we all have to bow down to the drugs to help us.

I hope this has been helpful. I feel a bit rambley today!

devonshiredumpling profile image
devonshiredumpling in reply to SuenMike

Ah, the pain clinic. Hmm... I was referred to the local pain clinic a few years back now. And, of course, I knew the people who ran it (you know what that's like). The consultant had a bee in his bonnet about certain types of pain management - basically you got injected steroids alongside injected botox. Didn't do much really - but then how would it? The botox at the nape of my neck did relieve my morning headaches (caused by cervical spondylosis) but sod all else. I gave it up as a bad job. Mind you, he's retired now so it might be worth a second visit.

As a general rule of thumb, though, I heartily endorse what Suzanne has just said - the pain clinic is the place to go. It does what it says on the tin... :-)

devonshiredumpling profile image
devonshiredumpling

Well, now, my old lovely, there seems to be two of us. Fancy that..

devonshiredumpling profile image
devonshiredumpling

Erssie, as always a fabulous and comprehensive analysis of the subject and, boy, pain is a big one isn't it? You was very lucky indeed to find a pain clinic like that - control, for me certainly and at least one other person here that I know of, is of paramount importance. In the community I am fortunate because my GP has a similar attitude to your pain consultant. I am addicted to opiates - and I have always been quite open about that - because of the large and, more importantly probably, regular amounts I take.

When I first realised my addiction I panicked and phoned the GP in a right old state. When we met to discuss it he told me that I must choose between controlling my pain and being addicted - and the choice was definitely mine. If I wanted to withdraw from the opiates then support was there for me. I chose withdrawal and went 'cold turkey over the course of a Christmas weekend (this is some years ago now). I was very proud of myself and felt very clean - until the pain came back and nothing was as effective at controlling my pain as the opiates.

Behcet's is a condition that demands total honesty with yourself I think - and that isn't always comfortable. Consequently, I try to be scrupulously honest when talking about my experience of this condition with others. Sometimes that is very uncomfortable but I know for a fact that it has helped others to know that somebody else is flopping and floundering like a landed fish as they try to deal with their illness.

This is the sort of thing I wanted to incorporate into the book (I'm not sure if I told you about that nor not Erssie? A mainstream publishing house invited me to write an ebook about Behcet's that they would put their marketing team behind). I've been so tired lately that I can't marshal my thoughts but if the Aza/methotrexate cocktail comes up trumps perhaps that will change for the spring.

nicolakate profile image
nicolakate in reply to devonshiredumpling

I can totally relate to your experiences with opiate addiction. I am aware that I am physically addicted to them and have been for some years. Whenever I go through a 'good' patch and reduce my dosage I get shakes and sweats and can't sleep. Have never told my GP as too scared they would take me off them and I would be left with the pain!

I do think physical addiction is very different to psychological addiction though. I don't get any sort of 'high' from my drugs and I don't enjoy the way they make me feel (sleepy and not as able to concentrate) but I do need the pain relief. If I was ever pain free I would gladly stop them on the spot.

I have therefore stoppped worrying about this as I think I have enough to think about already. I am just happy to have some relief from the horrible pain and a chance to enjoy life!

devonshiredumpling profile image
devonshiredumpling

Wow! I can't imagine meeting somebody who knows! Interesting to hear her take on it too.

Yes, I must get me finger out on the book front. It will never be a money-spinner because it has a self-limiting readership - unless I sold it on a 'do you think it is just ulcers you have or could it be something more sinister' basis. But my heart doesn't work that way.

xx

SuenMike profile image
SuenMike in reply to devonshiredumpling

It would be so good if your book had a happy ending, but I am sure it will not! x

devonshiredumpling profile image
devonshiredumpling in reply to SuenMike

Who said I'm gonna let real life in to walk all over my dreams ;-)

devonshiredumpling profile image
devonshiredumpling

I am so hoping for better health this summer with a change of meds. Mind you, that is not happening now until Feb 8th because (get this) they don't have anybody with the time to counsel me! 1) I was counselled by my previous consultant 2) I have read and understood the ARC leaflet on the topic 3) I used to bloomin work there, they know me and my depth of understanding. Bum covering seems to have sunk to new depths I'm afraid

devonshiredumpling profile image
devonshiredumpling

decoded that means make sure you cover your bum, she knows and understands too much

lesleyg profile image
lesleyg

Just spent an entertaining time reading all the posts. Chocolate coated cannabis - sounds too good to be true! (Only joking but I'm sure it's not available in Australia).

Denise - my swollen ankle hurts even reading about you standing on it waitressing. If you want to message me I'll talk to you about getting a job where you are sitting down. Still hurts but can't be as bad a being on your feet.

Lesley

devonshiredumpling profile image
devonshiredumpling

What I have seen as an inpatient on some wards has shocked me to my core, yet on other wards I have been moved to tears by the humanity shown. All wards in the same hospital (I never did in patient stuff up country!). I can only think that it is the attitude of the ward manager\sister that makes the difference. I know that some of what I saw made me ashamed of my own profession.

Steamboat profile image
Steamboat

How do you know if you are addicted?

I take 125mcg patches of fentanyl

Breakthrough 30mg morphine 3rd hourly

When in hospital I have the patches

The morphine as above sub cut

A ketamine infusion

When I go to the pain clinic they try to offer me more but I feel ok on the above.

Worried about addiction

Felicity

Denise-- profile image
Denise--

Thanks for the replies everyone, trying to go 'au natural' so am trying out wheat grass because it's supposed to be great; it's doing the trick for me anyway, odd flare up but not too bad. Also got some tiger balm which helps; it distracts me anyway haha

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