I hope this is the right place to post. I feel bad as I see many of you are suffering and I may not even have RA!
It all started back in early July when I woke up one morning, went to grab a bottle of water from the side of my bed and the grabbing action caused pain in my hand. It wasn’t severe, but was enough to make me put the bottle down. I picked up the bottle again and the same thing happened. I brushed it off and thought that maybe I had just hurt my hand from something else.
Over the next week or so, it was still causing me pain and my fingers started to hurt in both hands. I thought it was time to see a doctor so I called my GP and arranged an appointment. At my appointment in late July, the GP asked if I had any swelling or any pain elsewhere in my body. I mentioned that I occasionally also had some pain in my feed but that was it. No visible swelling at all. She arranged for me to have some blood tests that included CRP, FBC, glucose random - gp, electrolytes (Na, Cr, K), liver profile, bone profile and thyroid function.
The results came back all clear. I went back to my GP (it was a different doctor this time) to see what the next step was. She said that as I had no inflammation, the pain hadn’t got worse or spread and my results were clear to wait and see and book another appointment if things got worse or changed. After around two or three weeks, I noticed I started to get painful feet and painful knees especially when walking up the stairs.
I’ve booked another appointment which I had this Saturday just gone (14th October). The doctor decided to order an x-ray of my hands to see if that showed anything. She also decided to refer me to a rheumatologist. I asked if there was anything she suspected, but she said due to the lack of inflammation and clear blood tests it was unlikely to be RA. However, she said there could be other forms of arthritis it may be, or it may be something totally different but that it was worth getting a specialist to see me.
I went to go for my x-ray tonight, but my car broke down, so couldn’t make it. Still waiting for the RAC to turn up as I write this post!
The fact that I’ve had so swelling at all throughout the last few months reassured me and so do my blood tests. However I know from reading online and this forum that doesn’t necessarily mean I haven’t got RA. I also never wake up with morning stiffness. If anything, the the problem stays the same throughout the day or gets slightly worse as the day goes on, but no stiffness when I wake up. However the pain is there pretty much every day. It isn’t severe but enough for me to notice it is there.
I have spoken to my partner about this, and she is very supportive, but thinks that it may be related to potential health anxiety. I have to admit, every small thing that goes wrong, I convince myself I have some sort of disease. So maybe she’s right. But nonetheless, the pain is definitely there and has been here for now around four months. I think using my mobile phone is potentially making it worse.
Over the last couple of days, I think that I may be getting some pain in my muscles as well, but again, where I am fixating on the problem so much, maybe I’m not?
It’s starting to really get me down, is there really something wrong with me, or am I making myself go crazy?
I just thought that if I post online to people that have probably gone through this themselves, I may get some help / advice.
Thanks everyone and sorry for the long post!
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virginblue4
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Sometimes, people have unequivocal symptoms, blood markers, and imaging that makes the diagnosis of a specific inflammatory arthritis comparatively straightforward.
Other people have symptoms that come and go over time, or persistent symptoms, with seronegative blood work (meaning, negative for RF, anti-CCP) meaning that it can take a while to narrow down the particular flavour of inflammatory arthritis that it is (there are >100 other varieties of inflammatory arthritis other than RA). Bewilderingly, depending on symptoms, it's possible to be diagnosed with seronegative RA; it's possible to convert from seronegative to (eventually) seropositive RA; and it's known unknown for someone's diagnosis to change several times over the years as blood work changes and other changes come to the fore.
I hope for your sake that it's not an inflammatory arthritis but musculoskeletal pain that is transient or has an underlying cause that can be corrected.
When you had your recent tests, was one of them for vitamin D? I'm asking because chronic severe deficiency of vitamin D can produce a surprising amount of musculoskeletal pain. These examples are both in women but in one case, the pain was so severe and the scan readings were so poor that it looked as if she had metastatic bone disease but it proved out to be severe vitamin D deficiency.
Thank you for replying and for the information provided.
I haven’t been tested for Vitamin D deficiency. Is this something that I should wait to speak to my rheumatologist about (I don’t yet have a date for my appointment) or should I go back to my GP in the meantime and see what she thinks? Something else that keeps coming up in the search results when researching online is the potential for Lyme disease. We have dogs in our household (it’s not me who generally walks them, but I do so on occasion). I go on quite a few walks at the weekend through forests and fields etc. Maybe this is something I should be tested for too?
I have to admit the worst part about this is not not knowing and constant second guessing of myself.
Your GP should be able to arrange the test for you and it can be handy for your rheumatologist to know the result in time for the appointment. If your GP doesn't have a CCG who permits this (even for a MSK work-up) then there's an NHS hospital in Birmingham that offers a vitamin D mail-order test to the public: vitamindtest.org.uk
in respect of the joint pains it might seem odd that improving vitamin D levels might make a difference to you but it possibly can without being as drastic as the cases in the paper I linked above.
For various reasons, even with supplementation, I don't move out of the severely deficient category of blood levels - but, possibly because I can be what I think of as "very severely deficient", my joints can feel remarkably better if I manage to work up to "moderately severe deficiency". I'm consistently categorised as "severely deficient" by the blood test results but those few points can sometimes make a tremendous difference to me
I'm active in a couple of sports so I'm out in the sun a lot (with appropriate skin protection for some parts). For many years, I've eaten a little bit of oily fish most days and 2+ full portions a week. It's why learning about my chronic severe deficiency was such a surprise to me and it would never have occurred to me to test it if two of my siblings hadn't developed early osteoporosis (similar lifestyles to mine with a lot more exposure to sun because of their sports choices).
The dosages that GPs can prescribe are subject to the CCGs in which they operate. E.g., in mine, the maximum a GP can prescribe is 2400IU per day for 3 months or 2x5000 per week. In other CCGs, GPs can prescribe loading doses of 100,000-200,00 per week and then a maintenance dose. It varies as does the CCG's policy for re-testing.
I've never made it above 18nmol/L (which is severely deficient in my area's reference range where that = <20nmol/L but I've been as low as 8nmol/L) so I've never made it to the point where I could go into maintenance.
I've been on various dosages of D3 plus K2 but my individual clinical picture is complicated by a kidney anomaly related to a genetic disorder that I have (but none of my siblings has) plus another genetic issue that I share with my siblings. My siblings have trialled very large loading doses and need to maintain on between 3000-8000IU per day with top-up loading doses to keep within the 'adequate' category.
However, one of my siblings was recently screened for a clinical trial that involves vitamin K and was expecting to be screened out in the initial round but was taken aback to learn that the results indicate deficiency. Now, it's not for dietary intake reasons which indicates that it's absorption/gut-related issues so it's possible that it's another thing we share. It's not practical to test this however as vitamin K testing is restricted to tertiary centres/research labs. (partly because it's assumed that vitamin K deficiency is rare).
Yes, yes trail seems to lead toward 'absorption/gut-related issues'. 🤔💭
[Just added bunch of (year-old) info references/ links for you over at Supplements/ Nutrients (B12, Vit. D, Potassium, Protein . . . ) for RAers/ Autoimmuners & Plant-Based Dieters (Vegans, Vegetarians, . . . ): healthunlocked.com/cure-art....
Scrolling downward toward bottom of page, you'll see several chunks of Vitamin D (Hormone) references/ links 🔗's. ]
There might be some 'absorption/gut-related' clues 🔍 in those 🔗's, the bulk of which are from Dr. Michael Greger 👨⚕️ & Dr. John McDougall 👨⚕️ (if you're comfortable working/ thinking/ conceptualising within a 'plant-based' framework). 🤔
(Merely additional thoughts to mull over 🤔💭💭 if interested.)
Not an easy nut to crack 🥜 🐿 — especially when doing 'all the right things' ✔️ ✔️ ✔️ to get the needle to budge. 😯 (Not easy to resolve especially with additional complicating factor of kidney anomaly/ genetic disorder . . . 😯 🙃 )
Very best wishes, ITYFIALMCTT (to you and your siblings) in resolving 🕵️♀️ 🔎 this mystery.
If you eventually 'figure it out', that's something (I think) quite a few of us would be fascinated to learn/ understand. 🤓 🤔
Hello again! Here we are, 8 months after my original post and I don’t seem to have got any further.
I saw the rheumatologist back in February who did a thorough examination all over my body and then requested a senior rheumatologist to do the same (they were both fantastic!). However nothing seemed out of the ordinary. They ordered X-rays of my feet and my chest but these were both clear. They then ordered the below blood test (I’ve wrote them out with the results exactly as per the letter I received):
ANA - negative (normal)
Rheumatoid factor = 25 (normal)
Anti-CCP = 2 (normal)
Syphilis test = negative
HIV test = negative
Hepatitis B test = negative
Hepatitis C test = negative
CK = 82 (normal)
Protein strip = normal
Lyme Disease test = negative (normal)
CRP 1 = normal
ESR 2 = normal
CMV = negative (normal)
EBV = negative (normal)
Rubella IgM = negative
Parvovirus = negative
ASO Titre 800 (raised)
Following on from the above results they were concerned with my ASO Titre level (normal is below 200 and mine was at 800) but said it could have just been due to a recent throat infection. They ordered another blood test for ASO Titre as well as an electrocardiogram and an echocardiogram. ASO Titre results came back as 400 (so dropping which is good) and I got my results last week for my heart and everything is normal.
In the meantime, I got my vitamin D tested in the middle of April through the Birmingham NHS hospital as recommended and my result was 45.9 nmol/L which is supposedly insufficient. I’ve been taking an oral Vitamin D spray they recommended of 6000IU per day for the first one month and then 3000IU per day as a maintenance dose.
I have to say, from around early March (so way before the vitamin d testing and supplements) I began feeling a lot better and this lasted until around last week. There was still always aches and very very mild pains but I thought I was returning back to normal! However, last week some of my knuckles started to really hurt and generally become a lot more achy. The bottoms of both my feet are now really hurting when I walk, the worst they’ve been.
But as always I’ve had no swelling (although I’ve frantically looking everyday and convincing myself I have swelling when I clearly don’t) and no stiffness. I could literally jump out of bed and run round the house if I wanted to.
I do suffer from health anxiety (not diagnosed but I’ve convinced myself over the years that I have all sorts of problems to the point of thinking that I’m dying). However this just feels different, the pain and aches are so real but then there are no visual signs of swelling and no stiffness.
I just don’t know what is wrong with me. I hate the uncertainty. I’m due to see the rheumatologist again in the middle of August so for now it’s just a waiting game
I'm impressed that they even tested for Lyme disease - you had a thorough screening. You don't say how old you are, but one thing I've noticed once I went through menopause is that I do get random aches and pains. Sometimes it's hard to work out whether they are due to the RA or not, but generally it's a different sort of pain, so I've just put it down to age.
Keep a note of what's happening and then maybe a pattern will come clearer by august. But it does all sound reassuring and nothing to be alarmed about.
Thank you for your response. I actually asked for the Lyme disease test and he responded saying that he had already wrote it down as something to test for. I don’t believe it’s something they test for very often. I do agree I had a thorough screening, the rheumatologists were really great!
Well not the menopause then! It seems to me from the people who post on here that younger men get reactive arthritis more frequently than other people, or a relapsing/remitting type. So you could well fall into the one of those categories. And the good thing is that whilst painful they don't seem to be very erosive, so don't get permanent damage.
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