Going mad with pain

[goodlife]

Cor Blimey I really am going nuts with pain in my joints, the colchicine, dicalfenac, and co-codomaol are just not hitting it at all. I am finding it so flippin hard to function. The heated underblanket is helping a bit in the mornings and am still doing the swimming 3 times a week. Any advice? My GP thinks I need DMD's and is cahllenging the rheumatologist.

[devonshiredumpling]

Bugger - just wrote a long reply and lost it! I'll start again and I'll number it so that it makes it clear.

1. I would suspect your GP knows you better than your rheumy, so I would let him go ahead and challenge. That is exactly what my GP is doing and just the fact that somebody is fighting on my behalf makes me feel better. I'm assuming you mean DMARDS? I'm amazed you are not on these already - you know it is the methotrexate type stuff, don't you? The downside is that it takes a while to take effect.

2. Does the swimming really work or does it make things worse? Just a thought.

3. Are you staggering your pain relief. For example, take diclofenac at 6, co-codamol at 9 and diclofenac at 12

4. What dose co-codamol are you on? You should be on 30/500 and not 8/500

5. Have you tried anything stronger, such as Tramadol

6. If you can't function - then don't. Wrap yourself up warm on the sofa with plenty of warm drinks and your pain relief on time.

7. That reminds me - pain relief: don't take it when the pain gets bad, take it regularly on the dot so that you have cover built up and don't have to wait for it to start working all over again.

8. If you can bear it come and whinge to us

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[bailey23]

Great advice from Di. I do think that the swimming is ok when you are not flaring but I find it doesnt help much when achy already!

Just a thought!

Hugs

Angela

[goodlife]

oh blimey I feel really lucky to have nursey Di on hand !! Yes you make great sense Di.....organisation is not one of my natural talents and I need to be more organised in how I take my meds.

I have oralmorph and the strong co-codomol but as I've been trying to start back at work the GP thought better to keep me on the stuff that wouldn't make me fuzzy.

Di yes my GP is a real trouper and I couldn't cope without her fighting my corner.

She booked me in to see her xmas eve to check I get through xmas ok, awwwww what a sweety.

I think you are right about if I cant function - then don't. I just dont want to take a day off already, but I am probably not doing myself any favours forcing myself in.

You are right in that keeping myself toasty warm really does help.

And Angela I think you're right about the swimming. I'm going to knock off till I feel better.

Seriously you guys are amazing, I never knew pain could be so evil!!

Lots of love Jill xx

[andreafm]

Great advice above

It seems you definately need a re-assessment of medication now and your G.P sounds up for it. I agree with Di that it helps to have a G.P that understands and is willing to challenge. It has taken me some years to get this....so your G.P sounds good.

The exercise can be counter-preductive if done when not feeling well so ease up on this when you are feeling really rough...just a little gentle stretching keeps you flexible.

You could try a soak in a bath of epsom salts with some lavender drops....very comforting especially before bedtime.

Good luck

[Hidden]

I may sound a bit controversial here, and this is NOT a medical opinion, but from personal experience sometimes taking lots of pain meds, particularly different ones, can make things worse. I remember in the press a few years ago a lady whose life became unbearable because her headaches were so bad. It turned out the pain meds were causing her pain.

I'm not suggesting this is the case with anyone here, but I have also been advised by my pharmacist and GP that sometimes weaning off them a bit and re-managing/re-ordering how I take my meds can help. It did. As per excellent advice above, waiting until the pain comes and then treating it isn't the best thing to do either, and management of meds plays a key role.

A pharmacy review may help you with this - eg one of my meds was prescribed for twice a day, so I took it morning and night. Pharmacists suggested 11am and 3pm to stagger with other meds, and to drink a large glass of water with it. It made a difference to the nausea & tummy aches I get.

If you haven't been to a pain clinic for advice that might be an option to consider, but meanwhile, as per other advice, if you feel too poorly/in pain to do something, then don't do it if at all possible. Keep warm and rest. I hope you feel better soon.

[goodlife]

I agree that I think the excercise is indeed counterproductive as its just adding to the pain right now so I shall ditch it and try not to reach for the chocs! hehe

You are quite right my GP is an absolute darling to me and has believed me the whole way and that is worth an awful lot to have someone fighting for you. She says that I have to remember that they (rheumy and neuro) don't know mw like she does and that's true.

I was working 60+ hours a week and caring for my family and a bundle of fun and positivity before all this came along,

She feels they are tagging me with "middle aged woman ME tag" beacuse my blood results are clear they keep saying either Bechets coming to the boil or ME.

I think I will go to the pharmacist and get him to give me timings.....I think a combination of all your advice is a really good solution and will indeed optimise the effectiveness of the drugs.

Awww thank you all, you are real kind lovely people.

Love Jill

[SuenMike]

Hi there,

I think what Tigerfeet said was very sensible. I have had a great deal of different pain relief during the past years since I was diagnosed. Unfortunately my kidneys have been badly damaged by the disease and cannot take non-steroidal anti-inflammataries. These used to help me the most, until they were stopped because my creatinine levels fell dangerously low. My GP, who knows me very well, started me on trans-dermal fentanyl patches and they seem to be working well.

Have a discussion with your GP. I was referred to a pain clinic. Perhaps you should ask if you can, too.

Best wishes and good luck xx

[goodlife]

Thanks SuenMike, I did call the pharmacist today and he did give me some tips regarding timings of when to take my meds, so I think it was a worthwhile excercise.

he was horrifed that I was taking 3 x 500mg colchicine...said he'd only ever seen it prescribed as a course of 12 tablets for gout. He's been in the business a long time too, but I mentioned Behcet's and he said he would go off and research it which I thought was sweet.

I am very "to hell with the consequences" at the moment, but you are right and I will ask about the pain clinic as we need to look after our organs.