arthritis and fibromyalgia

[oliviagodfreyxx]

hi everyone, hope you are all keeping well. i had a telephone appointment with my consultant in regards of how my methotrexate is doing etc. i told her that i’m still in pain a lot of the time and felt like i needed to try something else or make some changes etc.

her response was that she doesn’t want to change my medication and weaken my immune system during the time of a pandemic which is understandable, however she mentioned that my blood work is ‘that of a normal persons and you wouldn’t be able to tell i have arthritis’ and that she doesn’t want to mess with my medication. she said to take pictures if my joints swell up as that’s the only way she’d make changes to it.

now that seems like a good response, blood work is fine HOWEVER for me, this is not what i wanted as i’m still having flare ups!! it’s frustrating how i can feel on the verge of death yet my bloods look completely normal. another issue is that my joints aren’t always swollen when i’m in pain, i cant document it and take photos because it looks no different to how it usually does. i’m starting to think maybe i have some type of fibromyalgia, i suffer with chronic fatigue and pain, my legs and arms are sensitive to touch and feel bruised sometimes, i have recently suffered with IBS which flares up every now and again and sometimes have blips of brain fog.

i’ll also mention i have depression which i have been put on antidepressants for. this has helped more with my fatigue and sleep etc however i feel like there’s some underlying health condition other than arthritis that i am suffering with. sometimes i get swollen joints and then other times i get pain that isn’t necessarily around my joints. like along my humerus muscles (upper arm). it’s very debilitating and because of the pandemic going on i feel like it’ll be a while before i get to the bottom of it. my consultant seemed pretty dismissive and didn’t question me about it when i mentioned i wasn’t feeling 100% so im kinda down in the dumps and unsure of what to do.

[oldtimer]

Perhaps you need to look at that depression feeling which can be linked to increased perception of pain. Is it possible for you to look for some talking therapy or psychological support? Don't forget the NRAS helpline too, if you are feeling down about it all.

[marie66]

Hi, I have Fibro too and it's still really painful even when my RA is more or less mostly under control. My bloods are pretty good too now but the pain is still awful. It's fairly common to have both Rheummy told me! M x

[Pippy25]

I'm so sorry to hear this and it saddens me to hear you are suffering. Do you keep a diary of how things are each day, as this may help build up a picture/pattern which you could share with your consultant/ GP and any health care professionals who may be involved. I feel that seeing a person as a whole is so important and not just a condition and maybe by keeping a diary it can help give a picture of what is happening and 'join the dots' so to speak if there are any connections. Again pain, flares, anxiety, stress, fatigue, depression can be a vicious cycle. I know in the past I found helpful some Life Long Health Condition programmes (one which was run by the NHS, the other by Arthritis UK) which helped explain, explore, gave useful advice and coping/ managing techniques. Although I realise in these current climes attending a group would neither be appropriate or available, but wonder if there is something similar running on line? It may be worth a call to NRAS also to see if they can provide advice or know of support you could access too. Again in these strange times we are living in I have come to realise my mobility, despite trying to keep as mobile as I can is not the same as if I were able to go about my usual business, my pain and swelling is more than usual, I have my good days and my bad emotion wise and for some it's been a testing time for lots of reasons. Again trying to access appointments for some has been good and the service has been positive but for others not so and again all this impacts upon your well being if you don't feel heard, understood or can't physically show what is wrong or happening or have appointments cancelled/ rearranged. Take care and I'm glad you have posted, hope you can get some help and advice to improve things for you. Kind wishes, Pip x

[Bails67]

I have RA and I haven’t had that many swollen joints. It was difficult to diagnose but when I first had symptoms I had several xrays on my hands and discovered I had joint damage! My bloods were fine to start with too! I was always in pain and I could hardly move but the swelling was minimal. I had antidepressants for a short time but got some help through the doctors and talked it through with another person.

Perhaps you could ask for some scans, if you haven’t already had some? I hope you get some help.

[Hidden]

Poor you Olivia your consultant doesn't sound like she has a very good bedside manner.

In a way it's good your bloods are normal, you don't want to take meds you don't need. You say you have Chronic Fatigue so wondering if you have chronic fatigue syndrome which can cause debilitating pain, brain fog and fatigue, headaches, tummy issues, drug sensitivities and allergies.

As you know CFS and fibro are very similar but some rheumatologists are not very up to date with the best course of action for patients.

I wonder if your GP would be more sympathetic.

Also if you're not happy you can always change rheumatologist. I did.

Best of luck

Take care

Kiki

[oliviagodfreyxx in reply to Hidden]

thank you to say my rheumatologist has arthritis herself i thought she’d be understanding but she isn’t in the slightest!! my GP has been really understanding so i will try and get an appointment with them. thankyou for your advice x

[Hidden in reply to oliviagodfreyxx]

You're very welcome Olivia let us know how you get on.

[KittyJ]

It does sound like a sales pitch when you talk about a product and link to its website plus all your replies have been about this 😊