In despair and in need of help

3 years a go I was diagnosed with CFS, 2 years a go I was diagnosed with DDD (which is now being retracted by specialist as wear and tear).

For a very long time I have had a limp due to a very painful big toe. First I thought it was a bunion but from X-Ray results have been told it's a deforming big toe. I also have very joints in my thumb, knee caps and pain in my legs.

I put this all down to the DDD but I am beginning to wonder if it's RA? How would I go about finding out without doctors thinking I'm a hypochondriac because that's how I feel. Is there blood tests that can be done?

I appreciate all feed back

29 Replies

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  • Have you asked your doctors if Rheumatoid Factor has been included in any previous blood tests you have had?

    If not why don't you ask to have it now to,put your mind at rest?

  • That's a really good idea, will do that. Something is going on and would like to know what it is. I try to keep active but I am in a lot pain and am wondering why

  • Write down how you feel the pain is affecting you,,,,analyse it before you see your doctor.

    When I was first diagnosed I often found myself walking out of the rheumatologist's office & suddenly realising I had only listened to what he wanted to say & I hadn't asked any of my questions.

    Hope you get things sorted out soon.

  • Thank you so much, I am trying very hard to find out what is underlying

  • I am showing my ignorance here what is DDD.xxxx

  • Degenerative Disc Disease: spine-health.com/conditions...

  • Okay thank you i did wonder.xxxxx

  • Hiya Trulysad. Sounds as though you've gone through the mill, I feel for you. Unfortunately RD can't be diagnosed by a blood test, that's only possible by clinical assessment by a qualified person (a Rheumatologist) but it can indicate if you've inflammation in your body. You can certainly ask your GP if he/she will test you for RF (Rheumatoid Factor), although the result wouldn't confirm if you have RD but the higher the value the more likely you'd received a diagnosis. The result can be positive (that would make it more likely you have seropositive RD diagnosis) or negative (seronegative RD diagnosis), but a negative RF doesn't necessarily mean you don’t have RD. There are many people with a clinical diagnosis of RD who don’t have a positive RF. Confused yet?!

    A more accurate test is an anti-CCP, though your GP may not take this but a Rheumy will if you're referred. He could check your inflammation levels though, your ESR & CRP.

    It was more or less confirmed I had RD after my GP took RF & anti-CCP (I was diagnosed abroad & she had a special interest in RD) & presenting with very painful, inflamed feet, as well as what to me seemed the beginning of bunions forming, tailors bunions too. When I was established on my meds once formally diagnosed, the bunions & tailors bunions slowly disappeared so hopefully yours will do too, if you do have RD of course! Although RD has quite obviously progressed in the 9 years my feet/ankles have remained the most difficult joints to treat & always an indication of how well controlled (or not) I am.

    I hope your GP is understanding of your concern & takes bloods. Don't rule out OA as you've had a revised DDD diagnosis. Let us know how you get on & if you've any more questions ask away. Meantime maybe you'll recognise more symptoms looking through the NRAS & ARUK websites nras.org.uk & arthritisresearchuk.org

  • Hi Nomoreheels, what a catchy name you have. I realise I made a mistake in calling RA, RD and was wondering seeing as you also referred it as RD whether you also made a mistake or RD is perhaps Rheumatoid Disease or something?

    Many thanks and please excuse my stupidity.

    I will be honest I feel like I'm going round in circles, as the years goes on and the conflict in diagnosis comes to light I feel like I am loosing my mind. I wonder why we the patients have to fight for tests, shouldn't doctors be listening to us more? I am exhausted from the daily pain I live in, the constant feeling of hopelessness. In my head I'm screaming at the relevant consultants and so forth to hear me. But no I have to not only fight to get up and get on, I have to fight to find exactly what's going on with me.

    Hope I haven't drained you 🤔

  • We've cleared up RD below & no, you're not stupid! My username is a bit outdated because I'm now able to/have to wear a wedge or block heel because of my silly feet.

    Whilst I was fortunate that my aldea GP had a special interest in Rheumatology so knew the signs, which bloods to order & immediacy of referral, meaning I was diagnosed within a fortnight of seeing her, many don't & some can suffer a long time before their symptoms are recognised, the necessary done & a referral is made. So it's not so much they don't listen as they're not clued up on the signs, so we need to be assertive advocates for our own healthcare. This download may help you when you see your GP & beyond nras.org.uk/publications/ra... & no you haven't drained me! I empathise with you, recognise your struggles & really hope any info or experience I can share takes you one step further to knowing what's going on! 😊

  • Thank you so much, I like your name, as so many of us can't wear our heels anymore x

  • I read your comment . You helped me out as well . I have RA and PA . I took my Mother to her podiatrist . He looked at my feet and told me I had Bunions . I explained I have RA . He had no comment about it . Wow !!! My feet hurt . My second toes are curling . And I have Nodules on my finger tips . My Rhumatologist has me on Humira , and Otezla . Which I cannot take the Otezla . Also gives me B 12 and Depomedral injections in my Hips , knees , lower back , shoulders . It only helps temporarily .

    Wow !! Good Read

  • Your second toes, if by curling you mean have a bend at the middle joint it could be the start of hammer toe. If your feet hurt bring it to the attention of your Rheumy, 90% develop foot problems over the course of the disease yet they're so often ignored, not helped by them not being included in the DAS 28 if my Rheumy's typical, it's criminal it really is. Mine didn't check mine for two years even though I asked, until one appointment when I had nothing else to report. She was very apologetic as she could see I had numerous problems. I had hammer toes, metatarsalgia, pronation & more. I'd had disease activity in them all that time so was under medicated despite all my other RD affected joints behaving, an increase in meds & a referral to Podietry came promptly.

    Do you have OA as well or are your nodules caused by RD? I only ask as I have Heberden's nodes on my DIP joints ( the ones nearest the finger tips).

  • Sorry I feel embarrassed asking this but what is RD? I thought we were talking about RA. Is this something different?

  • Oh no my mistake I meant RA 😳

  • There is an identity crisis in RA. To often doctors and others confuse it with OA. The other area of concern is fundraising and insurance companies. Rheumatic Autoimmune Inflamatory Disease is the preferred label or terminology. People respond very differently to autoimmune disease / rheumatic disease(RD).

    I completely agree with Nomoreheels. The Cyclic Citrullinated Peptide Antibody is 90% + specific to rheumatic disease. This enables your doctor to rule out other diseases like Lupus. Sjögren, MS Ext.

    The drugs required to treat RD are very expensive therefore, you /doctors must satisfy requirements and gain pre approval for use of these drugs. Hope that was not to boring lol

  • Hi Trulysad, thanks for your fast reply. I notice it is the long comment from nomoreheels that refers to RD a lot, do you know what she means?

  • I don't, no Soobee, I will ask though 😁

  • Quite a few of us choose to call RA Rheumatoid Disease Soobee, my Rheumy & her team included, so therefore RD. It separates it from what those who don't have RD think is the same, OA. When used it makes people think & we don't get the usual "Ooo I've got that in my knee but just take ibuprofen for it" or "My next doors, aunties dog has that, they just give it cod liver oil". It's the Arthritis tag that's the cause hence changing it to Disease. That's not to diminish the pain OA can cause, as I have both, but that's wear & tear & not as life altering as RD.

    It seems to be a concern for medical professionals too as quite by chance a member posted the following recently which is along the same lines the-rheumatologist.org/arti...

  • Sorry just read this x

  • Sorry did not read far enough lol you have explained it very well.

  • I was told that I had degenerative disc disease some twenty years ago which I believe was misdiagnosed as I now have a diagnosis of PsA/Spondyloarthitis. I still have the back pain along with everything else. So it's a definite possibility that you have the wrong diagnosis. Clemmie

  • Thank you Clemmie x

  • It took me 20 years to get a diagnosis. I finally got this when we were abroad and a doctor actually took notice of me. I firmly believe that had we not been abroad that it would have taken a lot longer to get a diagnosis here. I hope that it won't take that long for you. Do your research, ask lots of questions and don't give up. Good luck. Clemmie

  • Some GP's just do a CBC . I thought the same thing for years that I was just being a Baby about my Pain and Fatigue . I went to 3 doctors . All said I was ok . Then finally I went to an internal Doc. She did a blood test . It contains several different things . They called me in before my next appt . Sure enough . I was positive for RA and PA . My Spine is deteriorating . C- spine ... now moving to my L . Both my big toes have what looks like bunions . And my knuckles on both hands tips of my fingers . These are called Nodules . You should request this Test if they won't .find a doctor that will . I was diagnosed over 10 years ago . Listen To Your Body . You know if something is wrong . Keep in Touch 👍🏼

  • Thank you sandy, I really appreciate your input and I think I will request the test when I next go x

  • Hi Trulysad

    Haven't had time to read the other replies, but I have RA and DDD.

    For me DDD causes different pain in toes etc. Swollen, stiff, warm joints tend to be some form of joint inflammation (there are many causes for this) whereas DDD tends to cause pain, muscle weakness (leading to a lack of control over, for example, straightening toes etc, nerve pain (like sciatica), balance issues, burning / tingling sensations etc.

    If you are having multiple joint problems in different parts of your body then don't feel in anyway bad about seeing your doctor and pushing for the relevant tests / investigations.

    Probably haven't said anything others haven't , but for me at least the 2 conditions, although both painful, are different.

    🙏🏻

  • Thank you very for your comment, I am going to see my doctor and ask for tests to be done regarding inflammation as something isn't right.

    In a previous post I explained that they are now saying although I have DDD it's in early stages where as before it was a lot different diagnosis and was much worse than what they are saying now. I am currently gathering information getting money together so I may request both my MRIs. I don't have any nerve damage though so wondering if first diagnosis was right myself. The neuropsychologist said it is most likely functional.

    I feel quite hopeless at the moment and feel quite intimidated by my pain clinic consultant. I hate confrontation so don't do arguing face to face. It's where I go from here without coming across like I'm a hypochondriac. The pain is real, the altered sensation in my fingers and thumbs are real. The severe vertigo to the point my stairs are an every day task is real. But they are making me feel like it's all in my head 😔

  • It could be that rather than thinking it's all in your head, they are unsure what the exact cause is and are limited in what they can do. My spine issues have only been 'dealt' with when they became an emergency. Twice. That was because there were discs pushing into the spinal cord and I was unable to move my legs. A good neurosurgeon won't do anything invasive without very good reason as the risks are quite large.

    Definitely keep on at them though, the more you tell them how much it is affecting your ability to function, the more they are likely to investigate.

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