Does anyone else get inflamed one minute and not the next!

Has anyone experienced bouts of on /off inflammation throughout the day? If I rest it goes down, if I do anything it flares up again. I'm on Humira and Methotrexate was added in again in September after a less than good experience with a registrar rheumy- felt rail roaded into taking it in tablet form despite being on injections previously for 6 years. ( got that sorted though!)

Struggled for three months and on a very visibly inflammed day last month Top dog Rheumy gave me a steroid injection in my shoulder and upped my methotrexate saying , see if you tolerate it if not we will go for plan B.

Saw another register today thinking I must be in for a Plan B as the steroid is still working a bit but the methotrexate is killing me! After sitting for an hour and half after my appointment time my hands settled as did my knees and they looked quite un-puffy, just in time for the rheumy to see me.!!!!!

10 mins back home doing simple tasks and they have swollen up again!! My Newest rheumy is sending me for an ultra sound to check if humira is doing it's job and he suspects Fibromyalgia. A registrar 12 years ago mentioned this to me and it was dismissed by another consultant and nurse months later! Feeling rather be- fuddled! I am in constant pain all the time and rely heavily on pain killers. Out of three visits in the last six months I have only been seen once with visible inflammation. Was soo peed off tonight that I have just got my son to take a photograph of my hands and think this may be my only hope. Kind of felt a bit fobbed off. Oh and he stopped my Methotrexate too due to having Migraines. Feel like I am in no mans land any advice welcome as I am so worn out with seeing a different doctor every time and doing as I am told only to have the goal posts changed every appointment. You would think I would toughen up after 14 yrs with this horrible disease but I think I have lost all my fight of late. Thanks for listening and sorry for moaning!!! xx

14 Replies

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  • you could have ra and fibro together.. bit worrying if that Humira isnt working?.. but he has plan b xx

  • The top Rhuemy said Plan B due to seeing me visibly inflamed , hence the steroid last month. The new Rheumy has gone off on another tangent as my hands didn't look anywhere near as bad as the normally do partly due to the steroid and resting them. He is now investigating fibromyalgia and other meds related to this, although when this was mentioned years ago I tried amitryptilyne and lost the best part of a week of my life....... and not in a good way....... never again!! I was knocked out on the lowest dose, such a light weight that I am !Just sitting here worrying about something I seem to have no control over. Think I will keep taking photographs of my swollen hands any everything else so that I can show the norm at my next appointment not the exception post steroid. xxx Hope you are pain free Summer xx

  • Yes photographs are a really good idea - that's what I do because I generally am swollen up in the early morning and evening and that's not when I am seen. But also if you do have fibro it won't reveal the same kind of swelling as RA so it's important that they can see how your swelling shows up so photos are a really good way of doing that as RA shows up in different parts of your hand and looks different to Fibro I'm told. I do the same thing - have swollen knuckles always on waking but usually they go down over the daytime. I showed my GP and my rheumy photos of my hands for this reason and that's how I got my diagnosis in part (although I refused steroids and didn't take any NSAIDs for days before my appointment so they were bad on the day). It's nonsense that they need to see things visibly as some of us just don't show up this way. Humira and MTX wouldn't help Fibro so maybe that's why they they are unsure what's going on in your case - sometimes it's a process of elimination. Tilda xx

  • Snap tilda, I too have swollen hands and feet on waking and again in the evenings. I have often wondered if this is the norm with RA. I've never thought about taking photo's but it makes sense. June x

  • Thanks Tilda, I have taken photos last night, this morning and just now! Jeeze my hands looked so badl last night though they were so un inflamed at my appointment, I am on ups and down like a yo yo! Had a day of feeling incredibly tearful so doing something like recording my swelling feels quite empowering and was the kick up the toosh I needed. What kind of swelling do you see with fibromyalgia? I scared to google it !!!! 14 years with r.a I can't bear the thought of them adding something else's in to the mix! Hope you are having a good day x

  • I don't have fibro but unlike Earthwitch I have heard that it can cause hands to swell - but more as fluid retention and not in same way as RA. My hands are usually very stiff in the mornings and it's all around the knuckles now - and goes away after a period of 30 mins or so but when I wake the knuckles are normally raised and pink and the same with when I go to bed sometimes. But I admit mine are never entirely free from stiffness these days and I can't fully clench them - so I think this is either the RA or OA which I know I have in my top finger joints closest to the nails. It is quite possible to get other forms of arthritis including Fibro and OA as well as RA and these wouldn't respond to the DMARDs. Glad you are taking photos anyway it may help the rheumatologist to know what's going on with you more. Tilda x

  • Yes, definitely take photos.

    Is it possible that the swelling isn't inflammation (if it goes down so quickly when you rest) but is fluid retention or something like that?

    As far as swelling with fibro, I've never heard of that - I would have thought that swelling would be a big sign that it wasn't fibro. Fibro can cause that all over pain though, and make you feel really tired.

  • Thanks Earthwitch. Day two of photographs is quite enlightening as I have found that I distract myself to not think about it my pain when I am at work, hence thinking I am going up and down all day.

    Mornings are bad and pretty much from 4pm onwards too. Seem to be better during the day so my initial perception of up and down isn't as accurate as I first thought. As soon as I do anything normal-ish with my hands for any length of time they get inflamed and if I have been standing my knees do the same.

    During the day a rest can sort me out but by evening I seem to stay inflamed.

    Thanks for the info re Fibro. I have been left once again feeling a bit overwhelmed by my appointment and the amount of information thrown at me. I was also furious that no reference was made to having had a steroid 4 weeks ago, just that my hands weren't obviously puffy.

    Driving home and using the steering wheel and gears for 30 mins had my hands inflamed again.If only I could have sent him a pic of my hands then!

    Just wish I had seen the top doc who thought I was inflamed enough to give a shoulder injection 4 weeks ago!

    A bit nervous about presenting the photos to the doc/nurse. Have you done this and do you think they will take it? I'm not very confident as I have been a bit down trodden of late with no continuity in my care. Thanks again for answering. I have been checking for some wise words since I got in from work, It's really hard to explain this to someone who hasn't experienced our pain isn't it? Thanks again xx

  • I'm sure the nurse or doc will find it helpful to see photos. They can tell if there's inflammation by doing an ultrasound on your joints - mine has never done this but an experienced rheumatologist or rheumy nurse will probably know when there's RA inflammation or not without it being obvious to you or others necessarily I believe so I wouldn't get too obsessed with it. Tilda

  • That's good to know about the inflammation and the ultra sound. Never had one on an inflamed joint before. Just the usual x rays. I'll continue with my pics. They will keep me going until my appointment card comes through the door. I have a 7 month kitten that keeps photo-bombing my pics so at the very least they might make the Doc smile! I think my spirits are a bit low as this has been rumbling on since September with three docs expressing their very own conflicting opinions to a weary me! My normal sensible head has gone out the window. Hopefully my good sense of humour and balance will be return soon. Thanks for taking the time to reply Tilda, much appreciated x

  • I'm sure your kitten will make them smile - and making rheumies smile is a very good idea - as is showing them pics of inflamed joints. In the days when RA was still affecting my joints a lot I found that I rarely had any visible inflammation ever - fortunately the day of diagnosis was a bad one though and my hands were rather shocking. He said he still remembers the photos though so they must have done the job! Tilda x

  • That was just what I needed Tilda, to hear that your photographs worked and hopefully Jess the cheeky kitten will cheer their day. Thanks again x

  • Hi

    The inflammation really burns and erupts around joints and itches. I just keep scratching to break the skin and that seems to work. What I eat effects it for sure. I was on humira for some years jabbing every fortnight. Now a different MAB which is kinder and better.

    harvestingkarma or Cat

  • Oh I should have said that stress is the enemy for sure and I find that sometimes activity brings the illness out more but gives you a better body to fight back with.

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