Iv been diagnosed with spine degeneration and arthritus in whole of spine. I have been told that the arthritus i have is osto, however that may be true in some parts but i feel there is some imflammotory arthritus going on as i have episodes of feeling like i am getting flu, feel cold then hot, falling in and out of sleep, can not eat, at this time the pain in my neck and shoulders is extreme. The problem i am having is that when i have bloods done there are no raised inflammatory markers. Is there a trype of inflammatory arthritus where markers would only be raised at the time of a flare and then return to normal.
My doctor agrees that osteo would not causes my symptoms and i cant account for anything else causing me to feel unwell.
Any advice please
Thanks
Christine
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yorkshiregirl44
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Hi Christine, I am sorry you are feeling unwell. Hope it helps to know that I have experienced flu like symptoms with my rheumatoid disease just as you describe. So much so that I often have to go to bed where I sleep for hours in the day and then sleep all night as well. I go completely off food, tea and coffee and turn to tonic water for a beverage. Usually after lots of rest and many extra hours of sleep, waking periodically as the hot feeling turns to cold and dozing off again, I am able eventually to return to my individual 'Near normal' self. I hope you have a restful nights sleep and feel better soon. Gentle hugs.
Thanks....I was tested for RA and told my bloods were negative. We know when something is not right and i dont think its coincidence that i feel unwell at the same time of intense pain.
This morning i got my appetite back and the pain is not so intense.
For along time i kept telling myself it cant be RA because of my bloods and feel i need to see another rheumy to inbestigate further.
I wish i could offer you some advice but i cant other than to say thanks for your support.
Thanks
Christine
Well psoriatic arthritis is notorious for inflammation not showing up in bloods. I think that's the case for the spondyloarthropathies generally, which includes ankylosing spondylitis (which affects the spine) as well as psoriatic arthritis. Have you had psoriasis at any time, even mildly or a long time ago? Some get PsA without having had noticeable psoriasis. I'm not trying to play the doctor - just that it might be as well to ask your rheumy about these forms of inflammatory arthritis.
Although I have psoriatic arthritis I did present with raised inflammatory markers initially. But the flu like feeling was very pronounced and the chills and fatigue were gruesome. After I starting Mtx I felt a whole lot better in myself.
It can take a while to diagnose inflammatory arthritis. I think what is really encouraging is that your doctor acknowledges the severity of your symptoms and that they are not attributable to the osteoarthritis. That is most definitely a start. Very, very often the thing that keeps up the momentum is our persistence. It's good that doctors take time to get it right, but don't let them give up on the detective work.
If you have may have inflammatory arthritis it's imperative that you see a good rheumatologist - so when you say 'doctor', do you mean rheumatologist? I initially saw an orthopaedic consultant for my osteo, but as soon as he heard that I was feeling 'very unwell' he referred me to a rheumy. And as it turned out, my osteoarthritis was caused by inflammatory arthritis, that is one of the things that can happen. Or you could of course 'simply'(!) have both.
Oh, just seen that you've said you need to see another rheumy. Yes! Go for it. Don't delay and good luck. Keep us in the loop.
Iv never has psoriasis but i do have crohns disease. The only rheumy i have ever seen just ruled out RA, de didnt order any xray or scans and only did basic bloods. He said i had fibro which i dont agree with, non the less thats what they say i have with osteo.
I need to find a rheumy who is going to listen and investigate further than the last one.
Spondyloarthritis (ankylosing spondylitis, psoriatic arthritis, etc) doesn't always have raised inflammatory markers, and is sero negative, so it can be hard to diagnose, especially if doctors are inclined to brush it off as osteo. You really need to be seen by a rheumatologist who has a special interest in ankylosing spondylitis or spondyloarthritis as most rheumatologists seem to not even consider it in women.
Crohns disease plus spinal arthritis should ring very loud warning bells with any decent rheumatologist about spondyloarthritis, as inflammatory bowel disease (crohns or colitis) often goes hand in hand with spondy. See if your GP will refer you to a specialist AS clinic.
Hi Christine, my Rheumy treated my symptoms not my blood results. Hes treating me for sero negitive RD. My symptom sounds just like yours. I'm now on a drug that helps a lot. My blood results have always been borderline, whatever that means. The X-rays scans & symptoms tell a different story. Good luck, as you or someone else said, you know when things aren't right.
Yes,although he doesn't have an awful lot of time & I'm aware of that. I've emailed him twice between appointments & he's got back to me straight away via my mobile. He's taken onboard my dislike of medication & doesn't try to dissuade me otherwise just says, well we're just see how we go. He gave me long lecture on how I must take care of myself which he did in a concerned way. So yes it suits me but then I don't really want to know to much details or test results, yet!!
I feel for you, I have both osteo of the spine and RA and it can be very draining on your body. I dont know about other people but in my case, being diagnosed with both, its often hard to tell what causes which symptoms, so they dont seem to worry which one is responsible. The treatment usually depends on the damage and/or pain, not which one is causing it.
Crohn's has been associated with Ankylosing Spondylitis so its definitely a possibility but I'm presuming u had an MRI or CT scan to diagnose the osteo... if that's the case then you would think would have picked up any reactionary fusing or enthsitis going on to an inflamed spine unless you have only just got the symptoms.
Did you have any temperature during the episodes? To be hot and cold is often a fever. But another thing to consider ... when I was in hospital having spinal surgeries, I had similar symptoms and they said it was probably the pain raising my blood pressure and that in turn released all sorts of chemistry that would make me hot, cold, sleepy and generally ill.
Anyway, best of luck, I hope you sort it out and get some relief.
Edit..... Just looked at a prior post of yours which says you did have 'bridging' of the vertebrae which I believe is classic of diffuse idiopathic skeletal hyperostosis (DISH). It would be worth looking it up and if you feel the symptoms sound familiar then you could ask the doc about it.
Im not sure about having a temp, it just felt like when your a coming down with flu so its possible that i did.
I looked up DISH and i could identify with all of the symptoms including wheezing or voice loss, i can also feel some pressure on my esosphagus when in some positions.
I have a doctors appointment on wednesday and to be honest sometimes i dont know where to start within the short time we have to discuss symptoms.
Thanks
Christine
I too have a lot of pain in my spine currenty and am flu-like, nauseous (abdominal pain), have neuropathy in both arms and legs, jaw, ear and nose pain, sores, bleeds, dry eyes, night sweats and lately, tinnitus too. Basically every kind of pain and unwellness imaginable except the type of joint pain I suffered for 3 years under the diagnosis of sero negative RA. Plus I'm dizzy - could sleep forever and very stiff. But my ESR is only 30 and I know my rheumy will be dismissive when he sees me in under 2 weeks.
I'm almost as guilty as my doctors for relegating symptoms to drug side effects or attributing them to OA. I tend to pre-empt the dismissal of others by dismissing myself as a hypochondriac these days!
However in my heart, like yourself, I know something is pretty wrong beyond psychological/ anxiety and wear and tear. But I've given up expecting any test to evidence this now. I have no skin manifestations to support PsA or Lupus apart from strange nail changes that could equally relate to drugs or mild Raynauds or Hashimoto's hypothyroidism.
I think the lower back and neck pain are probably OA related for me as an mri or my cervical spine showed arthritis. But the rest - seems rather a coincidence to me and like yourself I am now in too much pain to suffer the dismissive assumptions of my doctors. I feel I need to build a suit of armour to protect me from doctors and their drug solutions and assumptions now!
Surely Crohn's sufferers get inflammatory joint pain with this autoimmune disease and this doesn't always show up in bloods?
Not sure what next for either of us but something has to give and you certainly aren't alone - I now know many others in this same boat. You have my sympathy. Twitchy
in reply to
Hi T... sorry you are still unwell, I was hoping it would settle down for you but sounds like its hanging on. Sometimes people never get to know the correct diagnosis and just have to treat each symptom separately. Dont think of yourself as a hypochondriac but just someone who doesn't have a definitive diagnosis yet. (((hug)))
in reply to
Hi Netbuddy. I will never again go for the option of treating each symptom seperately. For starters I have way too many symptoms and secondly this seems to me to be an admission of total failure as an approach - almost unbelievable to think how unevolved, medically speaking, the human race still is if we are so unable to join up the dots - or at least try?
I feel in my own case, that it has to be a better option to find my own non drug approaches to managing my symptoms. My main regret now is that I didn't do this all along. I've always been a very allergic person and I feel I've let my body down a lot by submitting to all these powerful prescription drugs over the past four years. It's one thing if the drugs might be modifying the disease causing the symptoms - but another taking symptomatic treatments only.
Thanks for your hugs - I'm fine really and as Yikes says it's the rollercoaster affect of autoimmunity which sometimes has me labelling myself as a hypochondriac. When I'm feeling relatively well (usually after hours or days in bed sleeping) I think I've imagined how bad I was feeling earlier. A kind of selective amnesia I suppose!
My advice to Yorkshiregirl44 is push hard to find out what is causing your symptoms but only try the drugs you will be offered if you are sufficiently confident that they will tackle your symptoms and improve your quality of life.
Iv an appointment with my doctor on wednesday only because my daughter was pushing for it, i really did not want to go and have to explain it all only to be told ists my posture or something like that....its an ongoing battle.
If you find a way through or any tips let me know ..i will do the same if only to save one person from this chronic situation.
I sent you a relpy but sent it to the post below by mistake..thanks
Arthritis is bad any way you look at it. One isn't really a lot worse than the other but the treatments are entirely different. By the way, I know some people who have RA flares just a few times a year. I know others that have OA and they are tired from being awake nights with so much pain.. pain is pain, right?
I have inflammatory arthritis. I get hot and cold just like I have the flu. My whole body hurts.
Mayo Clinic is currently investigating why I have this going on. They sent me to an infection specialist
last week. My inflammatory markers were down just like yours at that time.. The infection specialist
said not to worry about it. Nothing showed up in the way of sickness and it's been a week. I guess that I am going to live with it. I still have it going on. Whatever it is.
Our markers will go up and down. Mine are down from having so much steroid injections into the spine.
I feel a little bit tired all the time up or down.
You sound like you have alot going on..Have you been to the mayo clinic or have you sent your scans over to them?
I've been at Mayo since November. I take breaks from being there to go home. Right now I am at home. Mayo just sent me a letter - and forms that I need to sign to open my case to John Hopkins and other specialty hospitals. My own state specialty hospitals couldn't help me. The inflammation gets so severe and starts damaging my nerves - actually killing them.. so it might be auto immune rather than just inflammation.. two very different treatments. Chemo is used for inflammation and massive IV steroids are used if it is auto immune. I'm taking Chemo plus light steroids (taper) I just started the chemo 2 days ago.. (and I feel very fine, no hair loss yet) I will get the second in two weeks unless another doctor intervenes..
For a few years they have known that my numbers were up. After taking 9 full strength aspirin for months my numbers finally went down. Mayo thinks that there is still damage going on.. so as I told you, numbers go up and down so you might have a great test result one day and then a week later have sky high numbers like mine does.. yes it fluctuates that much.. IF I was the doctor dealing with you, I would start treating the symptoms and get you going on a different pill - a lubricating (joints) with inflammation reducer.. yes there are pills that add a bit of lubrication to the joints...
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Dont think of yourself as a hypochondriac but just someone who doesn't have a definitive diagnosis yet. (((hug)))
Feeling like a failure
I feel like a tinwoman today
Feel like giving up on drugs.
Flare that feels like a lung problem?
