Normal inflammation levels but still pain & fatigue.

[mjrminor]

A couple of weeks ago I had a ton of tests, including my quarterly DMARD blood work, because I've been getting extreme fatigue and ongoing pain. All my test results came back normal except for a marginally elevated potassium level (which the doc says could just be cells breaking down in transit to the lab), and slightly low iron levels. Even my CRP and ESR levels are showing as normal.

Which leaves me confused. It's true I'm not seeing much inflammation in the usual places (hands and wrists) but if my levels are normal why am I still getting pain and extreme fatigue? It's to the point that I have to stop working in the afternoons (I'm self employed and work from home) because I can't focus.

My GP has given me a course of iron tablets to see if that helps. Does anyone else ever have normal levels but still experience pain and fatigue? I'm sero-negative and take a combination of sulphasalazine and hydroxychloroquine.

[KittyJ]

If your pain is from joint damage then that wouldn’t show up in bloods if they’re not inflamed. My day to day pain is because of the joint destruction and being in pain can be very draining I find. Do you have a lot of joint damage?

[mjrminor in reply to KittyJ]

When I was first diagnosed two and a half years ago an ultrasound showed some damage in both my wrists and a couple of finger joints on my left hand, but I haven't had any scans since then and have no visible joint damage. I agree that pain can be very draining.

[JBW1]

Im like this too, normal values but ache and pain, and have contacted my consultant about it to see if I should swap medication to sulfasalazine rather than methotrexate that im on. I am considering CBD oil but wonder if anyone else has experience with it. I am also seronegative

[mjrminor in reply to JBW1]

I hope your consultant finds an answer for you JBW1. I've not tried CBD oil. Seems like it helps for some and not for others.

[EnglishRose63 in reply to JBW1]

I took cbd for a few months last year and it did work for pain, it's great stuff. The first thing I noticed about it was it took my hot flushes and sweats away, which I didn't go on it for in the first place.. I couldn't afford it anymore though as it can work out expensive, but worth if it you can afford to stay on it. One thing I can advise is don't buy it from Holland & Barrett because it's not strong enough.

[Hidden in reply to JBW1]

I am taking CBD/THC oil, it really helps with the pain, anxiety, insomnia. My physician here told me I need 1 gram of CBD for a helpful dose, most of those sold in stores aren't strong enough. My hot flushes are still with me, got up four times last night to get dried out.

[Lolabridge]

Fatigue can be a problem for many of us. I have found it helpful to take a vitamin B complex supplement which has a high B12 content, which was recommended by other R.A. warriors on this forum.

If you are vegan, vegetarian or have just cut back significantly on the amount of red meat you now eat you could be deficient. It’s worth a try.

[mjrminor]

Hi Lolabridge. B12 was tested and came back as normal. Is it worth taking vitamin B anyway I wonder? Not veggie but maybe eat red meat once or twice a month.

[mariknub1949]

Hi all, I have same problem - Bloods now normal and supposedly "in remission" but am very far from normal! Still lots of pain, stiffness in shoulders, arms, wrists, hands, knees , ankle, feet and lots of fatigue! Still on 25mgs Methotrexate and Sulfasalazine 4 tabs daily. I have to wait till end April for Rheumy appointment. It is very draining and depressing. Have had RA for 1 year and had hoped to be fairly well by now, especially as bloods now good ....

[mjrminor in reply to mariknub1949]

I hope your appointment comes around soon. Sounds like we're in the same boat. It's so confusing.

[Hidden]

Oh yes. Fatigue is my biggest problem. Even though my bloods ok and stiffness and swelling not too bad . I know the disease is active. I can be fine one minute then BANG! Fatigue hits so badly I can barely function

[mjrminor in reply to Hidden]

It's so perplexing isn't it? My gp was telling me how great it is that my disease is under control. Yes it's great my inflammation levels are normal but still feeling like crap over here.

[JFlay]

My bloods are usually 'normal' (I'm sero positive) but I still have stiffness, pain, fatigue (it's better than it was).

My consultant said yesterday that no matter how well controlled RA is you still get fatigue 😕

[mjrminor in reply to JFlay]

Really? Did they say why that is? I honestly thought that remission meant pain/fatigue free. I guess I was wrong.

[Hidden in reply to mjrminor]

Fatigue is linked to inflammation. If you have the flu or a virus your immune system attacks it and all your energy is focused on this . RD is an autoimmune disease as you immune system is looking to attack a flu/ virus but there isn’t one it then attacks your own body ... its complicated and I doubt my explanation has done justice no doubt someone on here may be able to explain it better.

[mjrminor in reply to Hidden]

Thanks for trying. I just assumed because my inflammation markers are in the 'normal' zone that it meant I wouldn't get fatigue anymore. Wishful thinking I suppose.

[Hidden in reply to mjrminor]

🥺unfortunately I was miss diagnosed years ago . Fatigue was a constant. gp said I was depressed🙄🙄as my bloods showed no inflammation. By the time I was diagnosed I had joint damage in my hands. It’s a disease that likes to keep on giving

[mjrminor in reply to Hidden]

Sorry to hear that. I had something similar with a gp telling me there was nothing wrong with my body. I got a second opinion and here we are.

[JFlay in reply to mjrminor]

No, and I didn't really have time to probe further on that. She also said the medications can make you feel fatigued as well 😕 I've accepted that life isn't going to be same as it used to be and try work with how it is now, which on the whole is not too bad 👍

[M45984371]

Hi I am very similar to you. The fatigue hit me in May 2019, and I have been off work since September.Vitamin B12 and D deficencies were reported and corrected by October, however I am still exhausted and unable to work. Ill health retirement is now being pushed through by a (so far) tolerant employer, and my GP has no solution beyond saying this is part of RA for some people. I will be 60 next year and almost certainly retired. I hope for a sort of recovery back to some form of work, but it currently seems beyond me.

[mjrminor in reply to M45984371]

Sorry to hear that. It must be very frustrating. I guess in a way I'm lucky I'm self employed and work from home, even if it means working greatly reduced hours at the moment. I'm hoping the fatigue will ease up at some point. Befoe Christmas I was managing to work almost a full day. I hope things improve for you too.

[Yolzyyy]

How is your Vitamin D levels? I know the UK has barely any sun. I am from Australia

[mjrminor in reply to Yolzyyy]

Vitamin D levels came out normal. I've been taking supplement ever since having a massive deficiency ten years ago. B12 also good.

[Summerrain14]

I have had the same recently too. My rheumy nurse explained that for some of us with RA our bloods can be ok but can still have inflammation, pain and fatigue. x

[mjrminor in reply to Summerrain14]

Thanks for sharing, Summerrain. This is the kind of thing I wish I knew from the start. I feel like I've spent the past two and half years getting to know this damn disease, and yet I'm still learning something new all the time.

[jolaine75]

Well I seem to be in the same situation, but never been offered iron I do take Vit D.I find that only medication that help me with the pain is Steroids, they dont cause the side effects like the other medicationsI was prescribed Pregabalin, but all I was doing was sleeping day and night.

Rheumi, suggested Methotrexate but I have bronchiectasis and not advisable for these conditions. whilst I appreciate that these Rheumatologists are trying to help, they dont seem to realise that many of these medications are not suitable for people who have additional health issues.