Feeling really down

Hi all.

Need to vent a bit. Have for the past two years suffered from joint pain and stiffness in my hands and feet. It gotten worse over time and also spread to one shoulder. No test shows anything, been to several rheumys who all do the same tests, ultrasound, x-ray, MRI and blood test. But nothing show up abnormal.

I work full time in an office. But can only manage now to do so since I can work at home most days. If I go to the office I am so incredible tired when I get home so I don't have the energy to cook or anything else.

Just had another round of blood test which all came back normal. I got the feeling the doctor really doesn't believe me and thinks I am annoying for keep pushing for a diagnosis.

Prednisolone helps all symptoms, so as I understand there is most likely inflammation somewhere, then why can't they find it???

At the moment I only take paracetamol and ibuprofen which only takes the top of the pain. I have tried tramadol, they do take all the pain but I can bear the side effect of my being constantly dizzy.

Even though I didn't expect the blood test to show anything new this time, I just got really down seeing the results. I find it so hard to cope with not knowing what is wrong and gets even more down each time a test comes back normal.

Sorry for the long rant, but this forum seems to be one place where it is save to do so.

I am so glad I found this forum, you guys are all great

[sylvi]

Blood tests don't always show RA it does depend what it is darling so don't give up until you get someone to tell you what is wrong with. Hugs.xxx

[Hidden in reply to sylvi]

I suspect PsA but unfortunately my psoriasis doesn't show in the typical way so have some problems getting docs to take it seriously

[cmjdexterbunny in reply to sylvi]

Yes, all my tests were normal for a year. Only when steroids started relieving my symptoms did they suspect Polymyalgia Rheumatica. And then ESR and CRP came back raised. So they believed me!! I guess you may have PMR because hands and feet are involved and MY RF is NORMAL. I am 54 and it is rare until 6o and doesn't really exist before 50 but there are always exceptions. Good luck!!

[Hidden in reply to cmjdexterbunny]

I am only 38 years old, but as you say there are always exceptions. I will try to look up Polymyalgia Rheumatica

[Caza]

My rheumy treated my symptoms not my results

Good luck you know your body best keep pushing.

[Hidden in reply to Caza]

I'm from Denmark. Unfortunately it seems the doctors only relies on the test results

[Olmettig]

Did they do an entire Autoimmune Panel?? My RA came back positive, My factor was high, but I other blood tests came back normal.. its weird.. but I am in constant pain.. frustrating..

Find a new doctor, someone who will listen to you. You must have something in you are getting relief from the other meds. It's not in your mind, you know your body better than they do.. hope you get answers. Stay strong!

[Hidden in reply to Olmettig]

Not really sure what you mean by an entire Autoimmune panel. I can see they testet for RF factor, CCP, CRP, ANA and Sjögrens. I am now waiting for an isotope scan, but is not hopefull. I had one about a year ago which showed nothing.

Unfortunately I have been through several rheums. The first one did all the test and couldn't find anything so wanted a second opinion. When for it and got to the appointment. He started by saying "Hello I've read your file and can't do anything for you, but since you are here we can have a chat if you want"

Needles to say I wasn't happy with him. Then found out i have psoriasis, so a new rheumy to check for PsA. She dismissed me since I don't have dactylics. In fact I don't really have any noticeable swelling.

This let me to insist on trying prednisolone and when that gave relief to insist on a new referral to my current rheumy. Really don't know what to do anymore.

And the stress of not knowing if this will just keep getting worse, how will I cope with work, taking care of my self and so on is so not helping....

[Damaged in reply to Hidden]

I now feel guilty about all my whining. As frustrated as I am currently it seems your situation is even worse. I do understand your pain. I went to same GP for twenty years and it took my refusing to leave without blood requisite before finally getting a diagnoses. I am very seropositive in that CCP is 300. But currently have low inflammation so doctors are happy but me not so much. Pain is still excruciating. I think the worst part particularly with migraines, is knowing you will live. At times I pray for the opposite. Hang in there, many people with autoimmune disease go undiagnosed for years. In fact my Rheumy and Hematologist have developed a brand new test for IGG4RD an autoimmune condition previously unable to test for. Changes are happening all the time, doctors know that there are many who will remain seronegative which is why the cannot rely exclusively on test but clinical presentation is key.

[Hidden in reply to Damaged]

Don't feel guilty about whining, I think no matter if we have a diagnosis or not, this is very frustrating. I am so grateful that I found this forum where I can be allowed to whine And also meet such understanding and getting good advise. It really helps to hear other people's experience, it makes me feel less alone in all of this

[Olmettig in reply to Hidden]

Not knowing the area you live in. But, I live in a suburb of Chicago. I have found a wonderful doctor out of Gottleib/Loyola Hospital. She listened and is doing another type of test called the Vectra D, which is suppose to give you 12 biomarkers and tell where you flare ups are, but more information about progression. I have not received my results yet, but I am anxious to see what it says. She switched my oral Methotrexate to sub-q because I was experiencing vomiting. I now give myself injections, have stopped vomiting but I am extremely wiped out for two days after or so. I have to give it sometime they keep telling me. Sounds like you had a Autoimmune Panel with those tests results.

Find someone that gives you the time and listens.. so important. I hate when doctors treat us like numbers instead of people. Frustrating. Hang in there.

[cheshcat]

I literally just came up positive a few months ago. I remember the day I got sick and basically got worse from there. I think that was 3 years ago? Last summer things went really down hill and I bounced around with 3 neurologists and blood test after blood test and MRI after MRI. Nothing. Then my hands swelled up a few months ago. Honestly, at first I didn't even go in. Why bother? But my mom told me to go in to after hours (they did look pretty bad). He ran more tests for RA and everything came up positive. I'm not really sure why it's so damn hard to diagnose auto immune diseases but hang in there!!! I'm still doing testing but at least knowing they are on the right track is so comforting (although then getting confirmation is hard too because there was this sliver of doubt that you aren't "really" sick - but it is better knowing and having a plan). Now I think about doctors differently. You know what? Yeah, I'm a complainer. Because this is your job and this is my one body. I felt so, almost apologetic, going in before, it's so hard when everything is "normal". I guess along the way I learned to stand up for myself. Please hang in there, these are hard diseases to diagnose ❤️

[Hidden in reply to cheshcat]

My fear is that soon they will give up on me and if I am lucky "just" refer me to a pain clinic. I don't mind a pain clinic's help in being able to cope better with the pain, but I am not ready to give up on finding a diagnosis

[cheshcat in reply to Hidden]

Unfortunately, if it is RA or another auto immune, you will get more symptoms. My rheumatologist said he would have diagnosed me with RA even with out my positive blood tests because RA is a clinical diagnosis and the blood tests are only one part. Just keep going in when you get new symptoms. If it's RA, they will be able to "see" it. Until then, hang in there. I thought I had MS but in the end I guess it was RA (although I'm still wondering about Lupus). Unfortunately for us, things do keep getting worse as disease progresses. Hang in there!

[Fra22-57]

Have you been tested for fibromyalgia and have you had full thyroid test including ferritin, vit D.I'd your thyroid not right you can suffer with pain n fatigue

[Hidden in reply to Fra22-57]

How do they test for fibromyalgia? I know they have checked for pressure points though.

My vitamin D level is fine (I do take supplement for about 6-9 months a year (not by my doctors order) since I am adopted from Asia and have a bit darker skin then Danish people.

[Fra22-57 in reply to Hidden]

Yeh pressure points are main one n I had x ray of hands and feet n shounderstand n blood tests.If your thyroid isn't right you will feel bad.I am going to have mine done privately as NHS only do basic.Don't give up as you don't feel like you do n suffer for nothing

[Radiogirl in reply to Fra22-57]

Also, check your calcium levels because they can indicate parathyroid disease.

[Hidden]

Don't give up keep seeing different doctors until you find the right one 🙂

[Hidden in reply to Hidden]

Thanks I will try to keep pushing. Most of the time I am able to be positive, it is just whenever another test comes back negative I tend to get a bit down

[ITYFIALMCTT]

Have you been evaluated for erosive osteoarthritis (aka inflammatory osteoarthritis)? It's typically seronegative not only for the discriminatory RD tests (RF, anti-CCP) but also CRP and ESR: "The absence of established diagnostic criteria or a validated case definition for EOA is an obstacle to scientific research in EOA. For the purpose of our studies we have defined EOA as OA of hands based on the American College of Rheumatology (ACR) criteria (Altamn et al., 1990), along with the presence of erosions in at least 2 DIP joints on plain radiographs, in patients with a negative rheumatoid factor and/or anti-cyclic citrullinated peptide antibody, absence of personal and family history for psoriatic arthritis (PsA), and negative history for crystal induced arthropathies. An emphasis on the presence of central erosions on plain films and normal or near normal acute phase reactants (sedimentation rate and wide range C-reactive protein) may add to the specificity of the proposed criteria shown in Table 1".

discoverymedicine.com/Allen...

EO predominantly affects the hands but other research highlights involvement of the feet and large joints.

EO can be very difficult to discriminate from PsA tho' the lack of a raised CRP and ESR can be taken as lending weight to the diagnosis alongside the distinctive erosions.

There are several research papers describing EO. I know you've had some imaging and that it hasn't shown anything as yet but it seems that it can take several years for some people to show erosions (bad when it does show up - but possibly good in that a 'delayed appearance' might suggest that it is not a fast, aggressive form of inflammatory arthritis).

[ITYFIALMCTT in reply to ITYFIALMCTT]

Just to tuck this in the same comment thread - there are some interesting aspects of EO and whether it's a subset of hand OA that is associated with high blood lipid levels (and these can be related to vitamin D so it's hard to judge this given that you're supplementing unless you know what your results for cholesterol, LDL etc. used to be before you supplemented if your hands were troublesome then): medpagetoday.com/rheumatolo...

[cshah]

Hang in there mjf. I just got diagnosed with RA this month after having joint pain and extreme fatigue for over 3 years. Doctors kept telling me I was fine. I did not present with visible swelling, my ESR/CRP were occasionally elevated, but only slightly so they always said it was nothing like what it would be if I had RA or another autoimmune disease. I went through many other lab tests which were always negative. The past couple of months my hands and feet took a turn for the worst and the joint pain became unbearable to the point where I could barely sleep. Found a new rheumatologist who is also over-reliant on lab tests and text-book symptoms. She did test me for anti-ccp which others had not and that came back positive. She ordered vectra DA which showed moderate disease activity. I am finally getting the treatment I've needed for a long time. I'm seeking a new rheumy as my current doctor still seems to doubt what I have to say since I don't present with all of the classic symptoms. I need to work with someone who will listen to me.

Im hoping to get pregnant in the next year, so decided to avoid MTX and am trying plaquenil since it is safe for pregnancy. Only 2 weeks in so I don't know if it'll work yet, but I'm very hopeful.

I hope you find the right doctor! I heard all of the same things as you for way too long when there was really something going on.

[Hidden in reply to cshah]

So glad to hear you managed to get a diagnosis. Hope the meds will work for you soon

I will keep pushing, since I know it is not something I "just made up", but sometimes I do wish I just had all the "classic" symptoms, apparently it is hard to be taken serious when you don't present like the text book says you should.

[cshah in reply to Hidden]

I know exactly how you feel. It sounds crazy to want the classic symptoms, but it's really because a lot of this disease is invisible. People don't understand that you can look okay on the outside and be going through something so difficult.

[Missyprange]

Go to a Mayo Clinic. I was missed diagnosis for over a year. I was told I had Fybromyalga and Osto Arthritis but when I finally listened to my husband and went to Mayo Clinic in Jacksonville Fl. And saw a RA specialist. Before he even seen my bloodwork, he said by looking at my joints that I had RA. I'm on Humira and Mathatrate which has helped ALot.

[Hidden in reply to Missyprange]

Really glad to hear you managed to managed to get your diagnosis and meds that helps you

I am from Denmark so not so easy for me to go to a Mayo Clinic though

[Hidden]

To rant some more, what I also find really annoying is that since both psoriasis and arthritis can run in the family the doctors always ask about it. But I am adopted so have no clue what may run in my biological family. However the doctors always takes that to mean that no risk of increase probability due to family history. In my opinion it could just as well mean the opposite so they should neither count it for or against the probability of me having RA/PsA