Behcet's Syndrome Society
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Any tips on joint pain?

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 or tips?? :(

35 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.


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


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


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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


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 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 I will send you a rosette in the post.

naaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyy more joint pain :-)


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


Nice one xandii.... lol


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

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


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


I have extreme nerve pain from totally trapped median nerves (due to Behcets and scarring of tissue) and I suffer peripheral nerve pain and joint pain.

I find that I do not get on with anti-inflammatories, but I do take a nerve drug called pregabelin or Lyrica. I was told that this drug would be like Gabapentin as it is related, so avoided it for a few years as I really did not get on with gabapentin.

However, Lyrica does work for me. There are some side effects and it can make you a little dopey to begin with, but it is good at putting a blanket over the pain.

I am also on a low dose Fentanyl patch, but obviously there are times when there is a real pain overload from extra sources and I do not want to add more opiates, do not get on with anti inflammatories (bad guts and also asthma) and so I went to a medical herbalist who has prescribed cannabis.

The cannabis, which I have in chocolate form, really does help control all my types of pain, although I would also say at the same time it knocks me out. That is not unpleasant but it is not practical so is reserved for emergencies only. On average, I would take cannabis in this form for one day in about 2 or 3 mths or possibly even less frequently than that. I can recommend for me if in agony when I really need to dampen the pain, but I would think that a person in chronic pain who is trying to get pain controlled because they want to continue to work, go out and about and do chores, drive a car or machinery or get their life back to the way it was before they started getting symptoms etc the cannabis would probably knock them out too much to be able to lead a 'normal' life. There is also the added problem that in most countries certain medical or herbal substances are illegal. It is possible to get onto a trial for cannabis and have it legally via a normal hospital, but the trouble there is that those trials are controlled by the drugs companies who want to collect data for more common illnesses as that is where the money would be made. I was told that although my pain type and lifestyle made me a perfect candidate, sadly Behcet's was not considered a common enough disease for me to be accepted on the trial. Those who had other immune disorders and neurological conditions as well as multiple sclerosis were allowed entry into this trial as their data would be desirable to the drugs companies hoping to benefit from the trials in developing a drug to treat fairly common illnesses that will make them more money.

I think that there is a lot in diet that can affect joint pain. I know if I eat strong cheese or too much dairy, I can really feel stiff and sore in the joints almost immediately with cheese, or the following day with other dairy. Even eating too much bread/wheat gives me a flare up. We have experience with treating our elderly pets for joint pain and have noticed that a wheat free diet, high in omega 3 with added glucosamine or chondroitin really does help them. Also, building muscle up around the joint to support it seems to help. We did this with our dog using hydrotherapy. There is a link between these supplements and the immune system that vets recognise and it seems that Evening Primrose Oil or Borage Oil (sources of glucosamine) as well as chondroitin supplements help to prevent the body from attacking itself within joints, nail beds, or hair follicles. There is equivalent information out there for humans with similar joint pain, and equivalent treatments and diets too.


Hello my lovely! Good to see you here x


Hello....I thought I was the only Nan used to call me by that in '''ello me old dumpllin'' etc



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


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.'


Agreed. I get it from a medical herbalist, who knows his stuff, and can ensure that I am prescribed the correct types to be able to deal with my own pain. If I were to get it from the man on the street, there would not be any guarantees about type or quality etc. I have to pay more for a herbal prescription, but at least I can ensure it is properly checked over.


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!


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... :-)


My pain clinic was fantastic.

The consultant had a bee in his bonnet about modern psych approaches to pain, and actually, the philosophy they had was a saviour to me. They strongly believed and had stats to back it up that patients actually took fewer drugs, and lower doses once the control of pain management was handed back to them. Often when adminstered drugs by another person (nurse or doc) patients may go for higher doses or stronger painkillers because of the fear of the pain returning and that option no longert available. But if a patient is given the means of taking painkillers themselves, they seem to opt for lower doses at the onset of pain, and will actually take less if not as panicked about it not being available again later....i,e, a patient in control of their own pain experiences lower levels of pain. Before the pain clinic I had to wait until pain was an absolute crisis and too bad to get on top of, especially with pancreatitis and phantom limb type pains, so bad it made me pee myself regularly and take my breath away.....really embarassing and totally destroys normal life.

The pain clinic taught a few really good principles like:

The patient should be fully in control of managing their own pain and not dependent on another person's own assessment of it and relying on others to administer the means of pain control..

The patient should come to accept that there is not a cure to certain types of pain, but nevertheless it is not a patient's failing or their personal failure to control their condition that is causing the pain. it is ok to feel pain, and it is a patients right to acknowledge it because meeting it head on, armed with the right drugs or approach for them the patient is less fearful and pain levels drop to a level that can be tolerated.

A patient therefore should be given permission and allow themselves to experience the pain, rather than go into denial. Or worse a patient could be so in fear of pain, that it actually makes the pain worse.

The pain clinic found the fear of pain was mainly where patients like myself got hospitalised but were not listened to, and had to beg for pain relief and only be given it at the point of crisis where it tips over into not being controllable any more.

Knowing the signs, patients can recognise early onset of pain and should be allowed the tools to control it.

My pain consultant also had a sensible attitude towards those medical staff who constantly cite 'opiate addiction' as a reason not to prescribe stronger pills. They said, if a person experiences such bad pain they are not functioning in a normal life, they are trapped in a horrible existence that is far worse than the possibility of being addicted to opiates. If that patient was treated with opiates and at worse became addicted, then the pain consultant advised that weaning patients off of opiates when their condition improves may produce symptoms of withdrawal etc, but he felt that the discomfort felt is sometimes nothing and a small risk in a lot of cases, compared with the idea that a person should live constantly in fear of pain. I could not function at all with my pain levels, and everything they told me about being in control, along with pacing my lifestyle, has worked for me.

I feel I was lucky with my pain clinic, and felt that I was respected rather than being treated like a naughty child who had brought all these Behcet's like problems to be admonished for my lack of control over the disease.

Now I know, pain happens, and on my worst days have everything to control my symptoms that I know works. I am allowed anti-emetic injections at home, which means no hospital stays for a few years now.

As a result, I am on a patch one third of the strength of the one I was initially on, and I take far fewer painkilling drugs with a small assistance of herbal origin. However, I have developed hospital phobia because I know once inside an establishment I am no longer in control of my symptoms or drug treatment. it terrifies me. Most of my scarring is from where venflons and IV needles were inserted into veins that thrombosed, ulcerated then rotted the flesh of my arm. However, despite the evidence being there, I do still get nurses who need to take blood ignoring what I say about being careful because even a slight bruise or leakage triggers an over the top immune response, but generally medical staff who do not know me, do not believe it can happen....until it does, and there is a defensive reaction from staff if a doctor starts saying 'who did this? who caused the damage on this patient''' etc. Staff become wary and afraid to treat me, and often develop a sort of odd atmosphere. I cannot help having odd reactions to any trauma, or reactions to certain drugs (not allergic, but very odd reactions or fits) and when it happens, there is a sort of blame cloud above me that medical staff try and deflect towards myself.....and I want to say ''look its not my fault this happens!'' but they are so busy trying to set up a way of themselves not getting the blame for not having listened or acknowledged that Behcets can do odd things to the body.

Anyway, I have to go to a complex hand fracture clinic soon, and rather than worrying about the hand injury, I am terrified that they willl suggest some treatment inside a hospital, and terrified that my control over other bits will be lost as well as worrying that the doc will not stick to the one area of injury (3rd 4th metacarpel possible break/thickening/cyst??) and I am going to have to go on and on about my medical history and explain why I have such bad scar tissue on both arms etc etc....

Anyway, back to pain, I think pain clinics can vary. I had one where the doc said I should just use mind over matter and stop everything immediately.....then another, who allow me to have a whole box of tools to fix the pain and have a good psychological and modern approach to it.

Sadly, Behcets hardly every allows patients to go on drugs trials to treat pain, because the drug companies want results from diseases that are more common, otherwise they cannot make much money treating about half of our countries total number of patients with Behcets.

It is more likely that as part of behcets, another process is involved that might be investigated (e.g. carpel tunnel pain,peripheral nerve pain etc etc)

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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.


A book would be cool. Having some real case histories and other things that the medical profession would normally leave out of such a book would be good too.

When I told an old friend I had Behcet's I was expecting her to say ''what is that?''. She is a malpractice and medical negligence lawyer, and has had patients with Behcet's who were treated very badly by the medical profession. Refusing to accept it was happening and causing more pain and damage with investigations as well as declaring the patients had psychological problems, or were self harming or another was harming them. She saw the whole histories, was unable to give me the full details of course as they are confidential, but in a general way she said it was clearly a horrible disease with an awful lot of baggage and bad feeling on both sides of the medical profession.


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.



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


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


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!


You are a professional writer though, so this is definitely something you are capable of....but if you have been unwell, it is a project that probably needs breaking down into sections so that it becomes more manageable to meet deadlines.

I still have lots of patterns not yet written up, which is disgraceful for something only a couple of pages long....but can totally understand how an idea for a book could get shelved until you are feeling 100% well.


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


Don't you know that you're not allowed to have an understanding of medicine or your own body as a patient? And no, being formerly trained in the medical profession is not going to give you permission to have any knowledge of your own fact, it could even stand against you.....I have heard a nurse on a ward treating a very sick retired nurse saying to someone at hand over ''be careful with that one, she used to be a nurse....'' with a sort of eye rolling knowing look between them.


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


I have also been told by nurses, that they dread having to treat other nurses because they make the worst patients....and question everything! They def know too much.

However, when you have been a patient who practically lived in hospital 25 weeks in a year, then you pick up knowledge quite easily too...and witness a lot to cause concern about attitudes to the elderly, or others.

I had a friend with ovarian cancer, at advanced stage with intestinal blockage and she was admitted to the same ward as me and was screaming in agony. My Mum had and died of this, so I was experienced in what she was going through. The nurses not knowing we already knew each other, kept coming and pulling faces and giggling at her moans and groans of pain, and kept apologising to me for the noise, rolling their eyes and saying things like ''some patients are just more attention seeking'' and ''even patients with cancer are not that stoical, whereas others behave as good as gold''. I was disgusted because my friend was dying, and she had not been given anything other than paracetamol and was also withheld her normal MST as that is normal to do for any kind of normal intestinal blockage. so she had pain and withdrawals and very advanced cancer...and there were people giggling as if her crying out was funny! It was Mum was a tough old bird and not one to give in to pain, but I heard her moaning and screaming when she had a huge blockage. It hurts and nothing to do with whether you re stoical or not.

Now that scares me, as did a blind old lady being slapped on her arms for having missed the commode and getting a bit on the seat. She was about 95 for goodness sakes, had diverticulitis and sobbing her heart out with nurses telling her off like she was a naughty child. They left her sitting on the dirty commode for hours in the middle of the ward at about 2 am. I kept trying to get her help, and got into trouble and told to mind my own business.

That is part of the reason I have such bad hospital phobia, I have been an in patient enough times to see bad things. I can only hope that since my last stay, in 2006, that 7 years on it has really improved! Otherwise I ain't going....not unless I am already in my box!


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.


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.



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



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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