RA and fibromyalgia...... everywhere hurts

[Lizzyear]

Hello,

I was officially diagnosed with rheumatoid arthritis about 3 months ago. I am on methotrexate, 10mg once a week. I take the medium strength co-codomol two tablets upto 4 times a day and tramadol. Beside all my fibro meds. I think I cope quite well with pain. But this RA has got me beat. My hands are rubbish and the pain in my wrists is excruciating. The fibro has had a terrible effect on my being able to walk very far, legs are quite rubbish, and now I have lost my independence as I can’t dress myself, or even wipe myself after going to the loo, (apologies for to graphic!). I find it impossible to write, tx or email for too long, as pain becomes too much. I have my own business with my husband. I’m finding it harder and harder to get in for work. With the legs, the hands and debilitating fatigue I’m at my wits end. Any ideas or experience would be much appreciated- even just to no I’m not alone. (Although I would hate anyone to be going through what I am, I’m sure there are fellow RA suffers with more experience than me). Thank you for reading my post. (Sorry if it’s too winged, caught me on a bad day and bad night).

[Horsemadhere]

Ah Lizzy, sorry to hear this, it’s rubbish isn’t it! Mine started in my hands and elbows so I know how you feel!

You need to go back to your Rheumy as it sounds like your rheumatoid isn’t yet under control. There are several other drugs you can combine with methotrexate and you can take up to 25mg of methotrexate a week. In my experience I started on a low dose, like you, and then it was increased and other drugs added until the combination worked for me. Do you take folic acid too? Some of us are also on biological therapy too, I inject once a week with benapali.

It’s not nice, but there are other things you can try, so don’t despair! It just sometimes takes a bit of time to get the balance right!

All the best x

[Lizzyear in reply to Horsemadhere]

Hi Horsemadhere,

Love your name by the way!

Thank you so much for taking the time to reply. What is this biological therapy and injecting? I’ve seen a couple of people talk about it?

Lizzy

[sylvi]

Go back to your rheumy asap as the drugs your on don't seem to be working. Tell them whats going on.xxxx

[Lizzyear in reply to sylvi]

Thank you Sylvi, I will do. x

[helixhelix]

10mg a week is a very low dose of MTX, unless you are absolutely tiny. So it may not be doing much at all yet. Talk to your doctors as there is much more they can give you to get it under control. As it could also be that some of the pain you put down to fibro is actually the RA, so you could make huge improvements with the right drugs.

[Lizzyear in reply to helixhelix]

Thank you Helixhelix, I think I am not sure what is low or high dose, so thank you for that info. I definitely need something! Yep, every pain seems to go under the umbrella of fibro. So once all meds sorting RA hopefully a lot of what I thought fibro will too😁

[phil_54]

Hi Lizzyear, Sounds like tour having a real bad time at the moment my advice would be to go back to your Reumatologist and explain your concerns and that you feel the meds arent really helping at the end of the day they can only act on feedback from the patient, You usually find a commbination of meds do work well, I find Ibuprofen works well for me for pain relief, the one thing i have learned over the last 4 years or so is knowing your boundarys how much you can do before it becomes difficult such as when out and about i always try and go where i know i can sit down for a break if needed as i find just that 10-15 min sit down can make a difference.

The other thing is to keep posting as i have found out the people on this forum fully understand what you are going through and are really helpful it really does help to get other peoples take on a situation which a lot of the time is very similar to your own and i have made many friends since i joined over 2 years ago.

I wish you all the luck in the world

[Lizzyear in reply to phil_54]

Thank you phil_54, yes it’s lovely to hear it’s not just you that is experiencing things, and the advice is very comforting. Thank you for your useful reply and kind wishes.

[Liberty43]

It can take a long time for meth to work but 10mg seems low . I have both ra and fibromyalgia. Do you have an advice line to your rheumatology nurses? They are very helpful and can get you an appointment sooner. I am surprised you are not on prednisalone instead of lots of painkillers. You could also ask for a depo medrone injection in the bottom. You do have to ask. Are you sero positive or negative? I have more problems with my hands than anywhere else. Had an op on left hand due to ulnar drift, which had the effect of straightening my fingers. My right hand is well on the same way. Be proactive!

[Lizzyear in reply to Liberty43]

Hello Liberty43,

Thank you for your reply. Could I ask what is sero pro or negative..........apologies if it seems a silly question, have not seen or heard that before? Lizzy

[helixhelix in reply to Lizzyear]

There are some antibodies that people test for. The rheumatoid factor and the anti-CCP protein. If you test positive for either or both of those then you are classed as having sero-positive RA. The theory is that if you are sero-positive you will be more likely to have a more aggressive disease. However people's stories on here show that that is not always true.

To me the most useful thing about it is that it can lead to a quicker diagnosis. If you are sero-negative you can be ignored and dismissed.

Apart from that really don't worry about it. The consultant's letters to your GP will probably say which you are if you really want to know.

[Liberty43 in reply to Lizzyear]

Sorry could not reply taken to hospital with flu and pneumonia. Still here now. Horrible experience. Helix gives a good response there is also a page on the nras website which explains but as helix said you need to ask your rheumatologist about this. Lots of lovely people on here so you will find many different experiences. Hope you will be sorted soon.

[marie66]

Hi Lizzie it's murderwhen you'e hands are so painful. I have RA and Fibro too. I'm on pain pills and 12.5 methotrexate I can't tolerate any higher. My rheummy says RA seems to be settling but pain is from fibro. Things are slowly getting better so keep your chin up. M x

[Lizzyear in reply to marie66]

Thank you marie66. Yes in hands is tough! Don’t like loosing my independence dressing etc. Hopefully it will settle soon. Lizzy x

[popsmith1874]

Hi Lizzy I would go back to your rheumatologist as your clearly not controlled and need to up your Methetrexate or try something else, I've had Ra 3 years and am on Methetrexate 20mgs and Benepali and I've just had Sulfazalasine added 2 weeks ago as my Ra had stopped working and am waiting for this combination to kick in but the nurse said it can take up to a couple off months to start working so don't suffer if you have a helpline I would call it or if not phone the rheumy secretary and she will try to fit you in good luck xxx

[Lizzyear in reply to popsmith1874]

Thank you pop smith 1874, what is benepali? And sulfazalasine never heard of them, until these messages? Very green with all these RA meds. Lizzy x

[popsmith1874 in reply to Lizzyear]

Hi Lizzy sulfazalasine is a dmard similar to Methetrexate and Benepali is a bisomilar similar to a biological drug like Enthracept but a cheaper version but you need to qualify to go on them as they are expensive and they usually try you on dmards first

[Nuttyshirlz]

Hi

I’m also waiting for something else to be added I’m also on methotrexate and sulfasalazine.Ive being told to do a diary for when I see doctor so he can see what’s not working plus I’m also on blood pressure pills x2 and I’ve fibo so I’m being patient waiting for may 🙂

[Lizzyear]

Thank you nuttyshirlz,

It does seem to be a waiting game. Good idea to do a diary, I will definitely give that a try. Thank you and good luck, hope you don’t have to wait too long. Lizzy x

[summer32]

Have been where you are several times and also recently!!! Things will improve, the pain and debilitating effects wear as all down, xx

[Lincolnimp2457]

Hi Lizzyear, I was diagnosed with RA 2 years ago and was put on 25mg methotrexate + folic acid, I also take 400mg ibuprofen 4 times daily and co - codamol/paracetamol 500mg 5 times a day + Pregabalin 300mg daily - my RA is in my hands, wrists and left elbow and still get really bad flare ups where my wife has to do literally everything including help me with toileting, I am due to start benapali which is a biologic drug to run along side all my other meds, I wish you all the very best, keep posting and make sure both your doctor and rheumatologist know how bad your pain is as someone else said earlier they can only go by what you tell them x

[AbbieJ55]

You need steroids .......good luck