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(26 Posts)
painpainpain Mon 10-Feb-14 10:22:47

I will try to keep this as brief as possible.

I've been ill since Christmas, which began as a cold. Since then I have had the most painful joints, especially in my knees and feet, to the point where I was virtually unable to walk. Blood tests showed CRP of 89 and ESR of 21. The Doctor has been seeing me weekly and have been on 20mg of Prednisolone for the last 3 weeks. There was a slight improvement but since Saturday the pain and inflammation has got worse. I phoned the Doctors today and asked for painkillers, Co Codamol are not helping. I spoke to a different Doctor to the one I have been seeing who said she would only prescribe Naproxen and not Tramadol. I've tried these previously and they had no effect. Also, the doctor I saw last week said not to take ibuprofen based things.
I am in so much pain and cannot continue like this. Please anyone offer some advice.

Supermum222 Mon 10-Feb-14 12:30:40

Hi,
Sorry to read that you are in so much pain.
Have you had any antibiotics at all? Also, has your GP ordered a ASO test (Antistreptolysin)? You said you had a cold that started it off. It is possible you had a group A Strep sore throat and a post-infection complication can lead to joint pains like you describe.
A simple blood test could rule that out. If it is that you will need antibiotics.

Supermum222 Mon 10-Feb-14 12:31:15

Any other blood tests they have done?

JeanSeberg Mon 10-Feb-14 12:32:54

Your thread title concerns me, OP. Do you have some RL support that you can turn to for support at this time?

Supermum222 Mon 10-Feb-14 12:36:20

You definitely need sorting out. It doesn't seem right that the GP's are just offering painkillers and are not trying to get to the bottom of what is causing this.
What else have they done apart from offer painkillers? You must stress the seriousness of the pain you are in. You may even be better going to A&E if in so much pain.

ChaffinchOfDoom Mon 10-Feb-14 12:38:01

sorry you're stuck in this pain, OP

does your doctor simply think you'll get better? hmm
get someone to go see the doc with you and start demanding some blood tests/ action - it's not fair to expect you to deal with pain like this

painpainpain Mon 10-Feb-14 14:48:55

The Doctor has given me a leaflet entitled, polymyalgia rheumatica, so I am assuming that is the diagnosis. I am waiting for a Rheumatology appointment. I just feel I can't continue in this much pain. To be told earlier, that the one painkiller that helps in the slightest won't be prescribed, has left me in despair. I am only in my early 40's.

ChaffinchOfDoom Mon 10-Feb-14 15:11:52

googling that it says if symptoms don't disappear after a few days of steroids, then that is not what you have

could you afford to get a private consult? rather than wait for rheumatology?

DystopianReality Mon 10-Feb-14 15:26:08

You are quite young for PMR and 20mg Pred is not the right dose for that anyway. Also, it generally affects the neck and upper body rather than the lower extremities.
Have they checked your 'Rheumatoid factor' and 'anti Immune profile' (RF and AIP). Simple blood tests that were prob done with the other initial bloods. Your CRP and ESR do suggest an inflammatory process going on and can indeed follow a Strep infection. It sounds like a post viral arthropathy (inflammation of the joints) and it is right you have been referred to a Rheumatologist. These arthropathies may be self-limiting, tho' unpleasant...but it may not be, and a rheumatologist will be able to cast more light. I'm sure they will be able to improve your symptoms so you feel better than you do now. Sorry to hear your misery, it really can be grim.
Can you ask your GP to 'expedite' the referral?

DystopianReality Mon 10-Feb-14 15:33:30

Just a thought...do you have DCs and had they had what is commonly called 'Slapped Cheek'?
The reason I ask as that, as an adult, you don't get the 'slapped cheek' rash, often it just presents as a viral illness. But adults can go on to develop joint pains, typically in hands, knees and ankles. It is also known as 'Fifth Disease' and it is the 'Parvovirus' that is responsible

DystopianReality Mon 10-Feb-14 15:37:47

I meant 'auto immune profile, not antiimmune profile!

Elibean Mon 10-Feb-14 16:18:28

You poor love. I am no medic, and Dystopian talks much sense.

Just wanted to add that I once had a boyfriend who had a similar sounding autoimmune condition (Reiter's disease, I think it was called) following a UTI. His joints were really painful for a few months, then it burnt itself out - much as Dystopian says it can.

I wanted to tell you that because a) he was in his 20s at the time and said he felt like an old man and b) because it got better.

I really hope you get the rheumatology apt soon, and if you can afford to go privately maybe that would help?? Not knowing the cause for sure, and having a semi-informed GP instead of the real expert, must be adding to the depression of constant pain. Hang in there xx

painpainpain Mon 10-Feb-14 17:40:26

RF is 9.9 which I believe is normal? I do have grown children but have not (to my knowledge) been in contact with any other disease. I should explain the pain is most severe in knees, ankles and right hip. Arms and neck hurt but pain is bearable. Swelling in fingers makes things difficult. I've also 'lost' my voice since last week but the doctor seemed to ignore that.
I really am at my wits end, I don't even have the energy to cry.

DystopianReality Mon 10-Feb-14 18:07:20

Oh dear...
It could be this Parvovirus...fingers, knees and ankles,
You could ask for an 'HLAB27 test which is a tissue type test for Ankylosing spondylitis. It is sent off to London but is easily accessible on the NHs. I'm thinking about this as you have hip pain too. It might be requested by the Rheumatologist. He/she will rpob request an MRI scan too. When is your appt?

painpainpain Mon 10-Feb-14 18:48:10

I've no idea how long the waiting list is. Absolutely no chance of paying privately but that's a whole different story.
I feel suicidal with the pain. I don't even care what it is anymore, I just want it to end.

ChaffinchOfDoom Mon 10-Feb-14 20:42:10

does anything help? hot water bottle elec blanket, did you say you can't have ibuprofen , naproxen helped with my awful back; but have you got any kind of anti inflammatory? if you can take paracetamol then it works best if you follow dose times to the minute-

EmNetta Tue 11-Feb-14 00:10:33

Agreeing with previous poster that heat might help, or trying a TENS machine or even a herbal-based gel (Biofreeze) which works like ibuprofen gel without adding more meds to the mixture. I think this is wonderful, and worth the £10 or so cost for best pain relief.

flow4 Tue 11-Feb-14 00:30:37

Hello OP, I have been living with similar symptoms and chronic pain for a long time now... I have been diagnosed with hypermobility syndrome and multi-site osteoarthritis which is severe in places... After a few really desperate months, my pain is now much, much better, and some of the things that help most are unexpected... So I'm just sharing some ideas of things that have helped for me and might be worth a try...

Heat. Wheat bags help a bit, hot showers help a bit more (I can't have a bath because I can't get in/out), and saunas and jacuzzis help hugely. Most of my pain just goes when I am in the sauna or jacuzzi, and if I can spend long enough there (over an hour) the effects last for a whole after I get out. smile

Exercise. It is really hard to exercise when you're in pain, and I can't exercise at all on dry land at the moment, but I am swimming 4 times a week... I've built up from 10 to 25 lengths, and my general pain levels have dropped a lot. I'm combining swimming with sauna/steam/jacuzzi, and the combination of heat to relax my muscles, then exercise, then heat again works well for me.

Breathing/mindfulness techniques. These help a surprising amount. I think that I tense against the pain, and hold my breath, and this amplifies the pain I feel. Breathing/relaxation exercises help release some of the tension and so lower the pain.

Drinking water. Just water, not tea or juice or other liquids. I find that if I drink under 2 litres per day, my pain rises significantly. Apparently, dehydration badly affects the fluid in your joint, and makes inflammation worse.

Good luck with it. It will get better.

Musicaltheatremum Tue 11-Feb-14 16:21:58

My thoughts were along those of dystopian. Parvovirus can trigger an immune reaction int the joints. Doesn't sound like PMR as should go completely with steroids.

Musicaltheatremum Tue 11-Feb-14 16:23:32

If it's so bad your GP should phone up the rheumatologists for an urgent appointment. That's what I would do.

DystopianReality Tue 11-Feb-14 18:07:13

Just getting back...
How are you today?
Musical is right...ask your GP to expedite the appt..you need to see your Gp again and describe what you have on here, ie, suicidal with pain. Also, there can be other alternatives to the 'traditional' analgesics. Amitriptylline, can be used successfully to reduce pain though generally 'neuropathic' type pain, so Shingles and Sciatica types of pain. But it is mildly sedating so may be good at the end of the day when you need to sleep with minimal pain??

ChaffinchOfDoom Tue 11-Feb-14 21:24:09

oooh Jacuzzis are heavenly.

How are you OP? can you take someone along to the doctors again and tell them the whole story- print this thread and take it with you if it isn't easy to say out loud.
Thinking of you X

painpainpain Thu 13-Feb-14 06:00:28

Thank you all so much.

I've written a detailed list of every single ailment. I've also noted the tests to ask for demand and am taking my daughter with me to see my Doctor today.
Its ridiculous, I can't carry on like this.
I am not leaving the surgery until I am happy with the answers.

I forgot to mention in my original post that other worrying symptoms are swollen fingers (mainly on left hand) pins and needles in arms and the most horrendous night sweats I could ever imagine plus lower back pain.

I used to swim regularly but am unable to negotiate the steps into and out of the pool at the moment, as my legs are so bad.

I refuse to be fobbed off with vague answers anymore.

I just want my life back!

ChaffinchOfDoom Thu 13-Feb-14 09:21:20

good for you! thanks

let us know what occurs.

sometimes even a good doctor needs a kick up the arse - new proverb grin

sicily1921 Thu 13-Feb-14 19:57:18

So sorry to read your post OP. I am an experienced health professional but have not worked the NHS for a few years,( just saying that so that you know where my opinions are coming from).

Anyway, I will try and put things in a nutshell here:- you have what sounds like intolerable pain and no definite diagnosis. You need an urgent referral Being told you have been referred but you no idea when you will see a specialist is not good enough. I think you will have to put the frighteners on your GP and spell this out. Simply say clearly and firmly you cannot go on in so much pain. If you were in hospital and experiencing such levels of pain you would be seen ASAP with a strong painkiller! Why should you have to suffer at home?

A post viral illness can take all sorts of weird and (not so) wonderful forms but the bottom line is, a GPs opinion and some painkillers is not good enough. I hope this helps and you get an expert opinion soon.

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