Doctor says I'm worn out

[Minuahavetta]

I've been trying to find out why I hurt so much. My joints and muscles hurt constantly from my ankles to my shoulders. I've asked to see a rheumatologist but my doctor says my blood work says that I have osteoarthritis. Is it possible that he has never heard of seronegative RA ?

[GeorginaS]

Hello. I don't know but I found this and it might be is use/interest rheumatoidarthritis.org/ra/...

[nomoreheels]

Hiya Minuahavetta. Well, considering there's no blood test for osteoarthritis I'm presuming he doesn't mean that the blood test reveals OA rather that it doesn't reveal RD (Rheumatoid Disease or RA.). Have you asked for a copy of the blood test result? That would be helpful for us to see if there's a possibility they're showing you may have seronegative RD.

Whilst it's true seronegative can be misunderstood we would hope your GP would be more up to date. Sadly that's not always the case. Patients with OA though do tend to 'looked after' by GP's rather than Rheumatologists so from that he should have more experience of recognising symptoms, that any inflammation is different to that of an RD patient, that unlike RD there tends not to be morning stiffness that lasts an hour or more etc. Do you have any inflammation or is your pain limited to your joints & muscles?

If you could give us some more info, the bloods results as I say would be helpful (both your ESR & CRP plus Rheumatoid Factor & anti-CCP, though this test isn't always taken until you're referred to a Rheumatologist, any off these would help) plus any other symptoms, timeline, possible family history of RD maybe we can work out between us if you should be going back to your GP & requesting the test is re-taken.

[Minuahavetta in reply to nomoreheels]

Hello, I haven'tasked for a copy of my blood work but I will. I also have lymphoma but I don't believe that I'm sick from the lymphoma. The most distressing part of my pain is that it is spreading. It started behind my knees and in my ankles, it has spread to my hands, arms,shoulders. The stiffness is beyond belief in my whole body. I do have swelling in my legs at times. Absolutely no hope from my doctors, just pain management

[nomoreheels in reply to Minuahavetta]

I'm sorry to hear you have lymphoma. The symptoms don't overlap though so that at least should be helpful. Are your affected joints bilateral? Commonly, though not always, RD presents as symmetrical. If they are that would add to your case to be referred. Is there another GP at your Practice you could see given you don't have confidence in the one that took bloods?

Your legs wouldn't swell though, it's the joints where inflammation is present. It might help to have a read of this, see if anything seems familiar & so you're fully clued up once you receive a copy of your blood results arthritisresearchuk.org/~/m...

[Minuahavetta in reply to nomoreheels]

My pain is symmetrical, muscles and joints

[nomoreheels in reply to Minuahavetta]

Symmetry is good, muscles not so commonly from the point of view of leaning towards a diagnosis of RD. That said continual inflammation in RD can also cause other cause other issues, myositis is one, muscle pain which in turn can cause stiffness. Have a look online & see if you can relate to that. You could try bathing in Epsom Salts, that may ease the pain.

Another consideration, if you have limited joint inflammation, is fibromyalgia. Was that mentioned?

[Minuahavetta in reply to nomoreheels]

I have mentioned fibromyalgia to my family GP. He said that it is very rare and that I don't have it. My oncologist said that it is discovered by a process of elimination, and that there is nothing that can be done for it anyways. I have mentioned my pains to my oncologist and I am wondering why he has never mentioned the possibility of seronegative ra. His answer to my pain is painkillers and seems to be promoting medical Marijuana. I really don't want to be doped up all the time.

Another symptom I have is extreme tiredness, I make plans to build things and I just don't havethe energy. I sleep about 12 hours a day.

[nomoreheels in reply to Minuahavetta]

I'm not so sure it's as uncommon as is thought. According to ARUK 1 in 25 in the UK have fibromyalgia, 2.7 million according to HU Fibromyalgia Action. Did he explain why he didn't think fibromyalgia was involved? Did he take an FM/a blood test? Actually you could ask over there at the HU Fibro community. Some of our members have both but that's a dedicated site healthunlocked.com/fibromya.... They'll give you the full SP but I'm pretty sure whilst like RD there's no cure the symptoms can be addressed with appropriate pain relief & in some cases anti depressants (not for their intended use, they can also act as muscle relaxants, I take amitriptyline, an anti d for the same symptoms). I think your Oncologist is correct that diagnosing fibro is a process of elimination, there's no one test, but the blood test is a good starting shot.

Medical marijuana or cannabidiol (CBD) is possibly worth consideration if or when you've exhausted all other meds. It's something I'm researching for my h who has permanent post op pain following cardiac surgery, he's unable to take traditional opioids. It isn't an hallucinogen nor does it make you feel drugged up or high, that part, tetrahydrocannabinol (THC), is taken out. There are suppliers out there, Holland & Barrett being one on the high street. The brand Sativex is available for GP's to prescribe for MS patients though I don't think it's been licensed for any other conditions, yet.

[Minuahavetta in reply to nomoreheels]

Thank you very much nomoreheels, I have just come back from my family doctor. I had x-rays done of my ankles, knees and hands,because I had been told that I had osteoarthritis. The results were that there was swelling but minimal arthritis. He now agrees that I must have seronegative RD and is sending me to a specialist. I have learned a wealth of information from this site and overjoyed that I finally have an answer to why I hurt so much 😊

[nomoreheels in reply to Minuahavetta]

Well, there you go! I hope once your appointment comes through it's less of a struggle! Keep in touch & let us know how you get on.

[Philip]

If he/she is a younger GP, then he/she would know but if he/she is an old dr, the chances are a lot less, lol.

You can demand to see a specialist.

Don't be scared to tell your GP what you feel because, you know your own body.

Philip

[Philip]

I would find another surgery if there is any near by that has some tomboys, sorry I meant to sat young Drs, if not you can DEMAND, lol

[WaterLynx]

I would Definitely demand to see a rheumatologist. It took me some time to get answers, my GP was not helpful, tried to attribute all of my pain and inflammation to gluten, I'm not allergic to gluten. I even stopped eating gluten for three months "just in case." Not the problem.

Saw a good rheumatologist and got my seronegative RA diagnosis, getting proper treatment now.

I find it very necessary to advocate for myself as a patient in order to ensure proper care.

Hope you can get to a good rheumy soon!

[Minuahavetta in reply to WaterLynx]

Thanks very much Waterlynx, I will definitely start advocating for myself. This has been going on far too long ☺