Trying to understand this disease

When I go to drs they keep asking about pain. I'm not sure what they mean. They seem to think that pain is something that happens when your joints are squeezed, but its not just that. I've been trying to work out what is down to inflammation and what is 'pain'. Have you ever seen those videos where doctors are given fat suits to help them empathise? They can't move like they're used to. Well I think / feel a bit like that these days.

My understanding is affected by being off meds since the beginning of the year and all the symptoms of RA having come on together. I dont think I've ever felt so ill and confused. I didn't want to take too many painkillers because i wanted to be aware of what was going on. ANd I decided that the main problem which was lying beneath all the others was inflammation. Do you think the doctors understand this? Maybe its just me?

13 Replies

  • Hi Cathie, all I know is that I have pain, 24 hours a day, every day. I don't know if it's inflammation or what, it's just pain and I am sick and tired of it. Nothing takes it away. And I don't think that anyone who doesn't have this pain can understand. Although I am very lucky, I have a lovely GP who is treating me here in Saudi whose sister has RA so maybe he does understand a bit. Sorry to be such a misery, I'm just feeling sorry for myself today! Clemmie

  • I just say yes to having pain where it hurts or feels uncomfortable as I hope theycanwork out is it inflammation, a strain or whatever. The trouble is once they know it's RA they just say it's your RA.

    I am so sad for you Cathie as you had a really good period so it must be even worse to go back to pain again. Have you been to the pain clinic? I think the docs do empathise as they wouldn't have picked rheumatology or musculoskeletal otherwise but I imagine its draining for them too everyone coming in to them one after the other in pain, and they still don't have a vast array of things to help or cure, unlike other illnesses that have chances of cures. Squeezing is for pain but they can also see or feel fluid movement I think. Mine can and so can I especially on the knees.

    I had a neuro pain score recently which was ever so much better than the rate your pain out of 1 to 10, strangely included things like pins and needles type pain, ant crawling type pain, burning pain, tight pain, and a couple of graphs showing full time, intermittent , coming and going pain. This was much better than the very subject" are you in pain "method.

    I am thinking of you and Clemmie today, my Achilles tendonitis is improving with huge doses of non steroidal anti inflammatories but this week I would have said 15 out of 10 for my score! Xxxxxxxxx

  • Nice to hear from you like this! I'm still suffering after making an effort to going out to Christie Moore gig. It was lovely but I had to walk quite a way and i see to be in a flare within a flare.

    I found that the pain meds just messed up my brain, so I focused on meditation. It helped to put my mind at rest and concentrate on bits of me that didn't hurt. At one point that was just my ear...

  • Hi Cathie just wondering did you come of methotrexate? I have been off it for about 3 months now and have burning pain, I know that this means some damage is happening, will probably have to go back on methotrexate.

  • Yes I'm off mtx because of liver damage. My oa in knees became much worse, apparently mtx protects us against oa as well as RA. Am now on pred temporarily while I wait for embrel. Bit of a disaster

  • I can't imagine how difficult it must be for you Cathie, being off all meds and not using any pain meds either. But, I totally understand the need to be aware of what is going on in your body and trying to distinguish between different types of pain and the cause.

    I'm just as confused as everyone else about the different pains I experience, and it is so easy to put all pain down to RA.

    When I see my Rheumatology doctor he religiously goes through the Das 28 score routine squeezing all of the same joints each time. Each time he squeezes he says "is that tender" ? Nine times out of ten I say No to finger joints. Visually the damage is all too plain to see, but he squeezes in a way which doesn't cause me much pain at all. However, when I'm trying to open a jar or wring my face cloth out for instance the pain can be excruciating. If he squeezed my toes the same way as my fingers I'd be screaming the roof off. Take care Cathie, June xx

  • Sorry to hear that you are in so much pain. I must admit that I'm not doing well either mostly because of OA in my lumbar spine. This has been diagnosed recently from an MRI. I find my OA in the spine is what is causing me most of my pain at the minute but the RA causes a lots of fatigue. So it feels like being between a rock and a hard place. Sorry for the moan!

    My rheumy suggested taking tradamol and so on. During my last appointment, he appologised to me for not being able to cure this or for not being able to help me more. I can see that he is trying his best but, he does not have the magic wand. Although the bottom line from both my GP and rheumy is that you need your sleep. Therefore, you take what is needed to get a good night sleep. My rheumy says that sleeping well will make you cope better with the pain during the day.

    Sorry for not being able to help more!

  • It helps to share, dont you think! I seem to have got over the flare I had for going out (for the first time this year!) to a gig in the evening.

    ANyway I've been trying to think of how to explain to people how I feel. this comes somewhere close to explaining stiffness and inflammation. RA does produce some of the characteristics of old age - at least in me.

    And on the squeezinig of joints - I always get this wrong. I was once nearly bounced off my anti-tnf for answering the wrong way to make up a DAS score. I dont like these tests. Pain is subjective isnt it and its one of those tick the boxes things we seem to have to do.

    Hope you can have a good day/ rest of weekend. I'm taking my partner out for a special lunch, just hope I can cope!

  • You know what Cathie, it's all about getting on with life the best way we can. The fact that you have been brave enough to go out to a gig and having to walk a distance even though you are in pain is worth applauding, and I hope you enjoyed your special lunch with your partner too.

    Mostly, I am very determined to do the things I enjoy doing and I want to remain as independent as possible for as long as possible.......... but, sometimes I feel like an 86 year old instead of a 66 year old, but that's RA for you.

    And, I think it really does help to share :-) Take care, June xx

  • Thankyou June. One of the positive things about this recent experience is the lovely support of everyone out there. One or two people (not on this forum but 'friends') who have dismissed what I've been through. But mainly its been so supportive.

    Special lunch with partner was at a very unusual place in Edinburgh called the Gardeners Cottage. They have veggie beds in front of the building, its quite small. They do brunch and lunch on Sundays and we had roast mutton and veggies which were so fresh! I was a bit nervous once I was at the table, as to how I might get up, but I did that (despite rickety chairs - so modish!). Anyway that was for partner's special birthday, he deserved so much - at least I could organise most online.

  • Hi Cathie, sorry to hear that you're in so much pain. I think it's a good point about being asked about pain by doctors as it's a much more complex picture. I think stiffness, swelling of the joints and overwhelming fatigue are just as important for healthcare professionals to ask about. I often describe my hands to other people (who don't have RA) as feeling as if I am wearing rubber gloves filled with water as they're so stiff, swollen and heavy! I know what you mean about not wanting to take too many painkillers, in fact I was advised not to by the neurologist because I have migraines now but on the other hand was told to take them by other doctors. Hope you don't have to wait too long for Enbrel. All the best, Fran

  • i believe that alot of this pain is imflamation ive just had a horrid march mad march i called it refrained from ringing rhuemy for a jab triedto tough it out which i did .i understand what you mean about pushing bones and things the pain is every where every every day just to get up one day without pain would be like winning the lottert good easter everyone sunshine helping xxxx

  • Hope you win zoo bin lid! Yes I think my main problem is about inflammation rather than anything else. I hope you have some resolution in sight? I've got one week before I try Enbrel - fingers crossed.

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