Pain management

Former Member

I'm still waiting for my referral from the pain management clinic to come through, and I really want to do some stuff before hand so I can tell the clinic that I've given it a really good go.

It's mainly my joints and we know that there's nothing mechanically wrong (asides the reoccurring bursitis which isn't going away )

Can anyone suggest things? I'm going to start using heat packs more regularly on my back, and I want to see if I can strap up my shoulder and hip with elastic bandages. I'm not sure about using supports for my wrists and knees. I'm already using ibuprofen and codeine when I need them but I'm trying to use them as little as possible. I'm going to try going swimming once a week and see if that helps too (even if I'm just floating about).

Any ideas?

Former Member

Tried any holistic remedies (if you put any stock in them, and if they don't clash with your medications?) I think I was recommended a combination of lavender, peppermint, tea tree oil and rosemary for my joints/tendons etc.

There's also a middle eastern remedy called Robb Rub, which is similar to the Chinese tiger balm.

Are you hypermobile by any chance?

Former Member

I've been told yes and no by different people - physio said yes dr said no.

I'm very into alternative therapies, i've been using tiger balm, upped my multi-vits, kinesiology, changed my piercings to another type of metal (cos apparently that can cause joint pain). I keep meaning to try aromatherapy but I keep getting infections so I can't have one.

It's all getting me down tbh

Former Member

http://www.hypermobility.org/ has some useful information about hypermobility. Why did you doc say no? Hypermobility, and its various accompanying syndromes like ehlers danos, are really difficult to diagnose. From what I understand, there are only a handful of specialists who fully understand it and its implications, and one of these recently retired.

My physio was the one who first recognised my hypermobility, my doctor knew nothing about it. If I were you, I would badger your doctor to refer you to rheumatology (and if you can find one where there's a specialist in hypermobility, all the better, the hypermobility website should be able to give you more details on the specialists).

Are you on a progesterone form of contraception? If you are hypermobile, progesterone makes it worse. My hypermobility causes a lot of issues for me - it's not just about the joint pain. I have IBS, bruise easily, grind my teeth at night, have poor skin at times all related to the hypermobility/collagen issues.

Have you tried acupuncture? I found that helped with my pain management

What about going to occupational therapy and getting neoprene supports made?

Former Member

I want all these referrals but the dr won't refer me on he wants pain management to refer me.


Do I just go back and demand it?

I am on a progesterone based contraceptive but it's the mirena coil so I didn't think that would make a difference because it's so localised, but I'm no expert! The dr said I wasn't because I can't stretch my thumb back to my arm, but I can touch my toes...

Oh who knows I'm getting so tired of this I feel like just putting up and shutting and living the rest of my not doing stuff and living off painkillers.

Former Member

Any chance of seeing a different doctor? I firmly requested mine. I would've wanted the referral to the specialist first, rather than pain management.

The link I gave you in my last post gives you an overview of the criteria for being diagnosed as hypermobile. It's not just about your wrist movement - do your knees and elbow joints "bend backwards"? Do your shoulders/hips rotate more than normal (hips yes as you can touch the floor, what about your shoulders?)? And there are other indicators that I can't remember right now. I think they're trying to steer away from these indicators now though, but only a specialist can really tell you. If you read through the forums on that site, I bet you'll identify with a lot of what is said.

I'm also on the Mirena - yes it is largely localised, but in my experience you still get seepage into the blood stream. I get quite a lot of hip/lower back pain which I'm pretty sure is made worse by the Mirena. When it runs out I'm going to change to either non-hormonal or nothing, to see if that makes it any better. The specialist I saw (who is unfortunately retired now) was very clear that the Mirena would adversely affect my hypermobility.

To a certain extent I do put up and shut up - I make sure I get the reasonable adjustments that I need at work, use my splints when necessary and also make sure I relax. Try the Robb rub, I think it's slightly different ingredients to the tiger balm so may be good for you

Former Member

I spoke to the doctor and he totally refuses to refer me to anyone else, before I'm seen my the pain clinic. I could another dr, but he's really the best of the bunch.

My mum has been having a go at me for having baths as often as I have, so I'll need to find something else

Former Member

Oh it gets better!!

I thought it worth checking with the pain clinic if they had received my referral, but when I found their website, it states that they won't take on people with (or suspected to have) fibromyalgia. The dr didn't obviously check that before making me wait months having to chase up a referral he may not have even put in!!!!

I called rheumatology and they said I should have been referred months ago. So I call the drs and ask to speak to the practice manager who tells me that he'll speak to the doctor (who was meant to have called me back yesterday about the referral). Come 3pm I call him and find he's left for the day and won't be back till Tuesday!

I'm going to wait til Tuesday but if nothing happens I'm going to write a format complaint and go to PALS

WFT do I do?????!!!

Former Member

Hi Miss Riot,:wave:

Just checking on how things are for you this evening ?, Sorry to hear that your referral has still not come through and they may not be able to take you on at that particular pain clinic, definately chase this up with your G.P and ask about alternative referrals.

You have said that you have been swimming and using heatpacks ? Have you found this to be effective ?

Let us know how you are feeling and how things are moving with your referral.

Take care,

B:wave:

Former Member

heatpacks are great when it's not warm, I just end up overheating when it is!

I missed a call from the doctor today, so I'm hoping I'll get another call tomorrow. I'm just getting so tired and my mother is making life very difficult

Former Member

It's possible but I keep getting conflicting answers from the doctor. He's now said that I didn't have pain in enough of the pressure points for it to be fibromyalgia but I display so many of the symptoms. He's upped my medication again and the referral to the pain management clinic has gone through but he's calling them today to discuss my case and see if they will take me on or if I should go to rheumatology (but they might not take me on because none of the rheumatology blood tests came up with very much). We'll wait and see what happens I guess...I'm just getting so tired of waiting!

Former Member

Hi Miss Riot:wave:,

Its great news that your doctor is getting things moving for you , Im sure he is doing his best to try and get you referred onto the clinic that you will recieve the treatment most benificial for you.

Please keep posting to let us know how things are going for you.

Take Care,
B:thumb:

Former Member

I'm getting a little worried about a couple of new symptoms that have come on with in the past couple of weeks.

I keep getting weakness in my legs and spasms upon movement sometimes (my whole upper leg froze up as I was crossing the road the other day, freaked me out a bit). The other thing being sudden and intense pain (like being stabbed) in my upper back and hands. I didn't think much of it at first, but now its happening pretty much every day and but I don't know if I go to the doctor about it or if I'm just being a drama queen. I'm speaking to them or seeing them almost every week and I hate it!!

Former Member

Hi Miss Riot :wave:,

I am sorry that you are experiencing this type of intense pain it must be very distressing for you. If you are experiencing this every day I would go and have another chat to your doctor to explain how you are feeling and hopefully get things moving along with your referral.

Don't ever feel that your are being, as you say a drama queen, it is obviously a very troubling time for you and you just want to get the problem sorted as as soon as possible. Im sure your G.P/medical professional will understand this.

Please keep on posting and let us know how you are getting on and I hope things improve for you soon.

Take care,
B:thumb:.

Former Member

If it were anxiety or pain by themselves, I think I'd be managing a lot better, but sometimes it feels like I get anxious because of the pain, and the anxiety makes the pain harder to manage (because I lose things, forget to take my medication, don't get round to reading/doing things that might help because I'm running around like a headless chicken half the time).

I've got a book on mindfulness for chronic pain from the library which I need to read. Maybe I'll force myself to sit down and read it this week.

Former Member

I want all these referrals but the dr won't refer
me on he wants pain management to refer me.

Former Member

I am going to try and see if I can see another doctor, my mum has a trapped nerve and she's got an appointment for next week with similar people that might help me...

I'm just going to shut up about it now, I'm probably making it worse going on about it all the time.

Former Member

Hey,

Sorry i've been away from the computer quite a bit so haven't managed to keep up to date on this.

Did you manage to find out whether there is a hypermobility specialist near you?

Former Member

I can't get any other referrals out of this dr. He can't pin down a diagnosis so he wants the pain clinic to make the decision and won't do anything else until they've seen me.

I think that there is one either at my local hospital or the regional big hospital which is about 45 mins away.