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Talk to me about join pain for years and years with no arthritis markers?

(41 Posts)
cultkid Wed 20-May-20 21:58:42

My hand, elbow, wrist, knee, foot and most recently my hip have all been having deep dull aches for years
They actually swell up. They seemed to be bad when it was cold but now it seems to be an issue when I get sick or run down they ache so much I can hardly use them
I have had blood tests for arthritis done

In February I got a sore throat
I then got another one in April
Since December when I had a virus of some sort I have had a constant low grade fever with some days of it being closer to 39

I am not over weight
I am 27

I will speak to my pain doctor when lockdown eases up
But is there something I should be looking for? It really really really fucking hurts

OP’s posts: |
Deadheadstickeronacadillac Wed 20-May-20 22:00:52

Vitamin d deficiency. I know it seems like everyone's 'go to' explanation, but it may be an easy one for you to look into and try and remedy before lockdown ends.

cultkid Wed 20-May-20 22:02:42

Ive had tested in February and the levels were in a normal range
I've been outside constantly and I'm tanned now but still suffering
I also always have itchy hands and feet
And hives if i scratch

Honestly even 30/500 co codamol doesn't get rid of the pain

OP’s posts: |
HoneysuckIejasmine Wed 20-May-20 22:02:53

What blood markers did they look at for the blood test?

Do you get ulcers? In your mouth only or elsewhere too?

mynameiscalypso Wed 20-May-20 22:03:16

There are types of arthritis which don't show up in blood tests - I'd be pushing for a referral to a rheumatologist

cultkid Wed 20-May-20 22:06:32

I always have ulcers all over my mouth
I am so healthy diet wise
I don't have tonsils for example and never get a sore throat but I got one in February and again in April and before both I was with a mouth of say .. 10 ulcers which really hurt

My consultant was always asking me about fever and it wasn't an issue until January this year. I don't know if it could be connected. My watch and rings literally squeeze me. I am 47 kg, not large.

I will have to email the clinic tomorrow. I didn't know some arthritis didn't show up.

I can check the blood work pages tomorrow and see what was done but isn't it only really a snap shot of your blood on that day?

I had sepsis 3 times 4 years ago all within about 14 weeks of each other and I think it was the trigger for the joint pain

OP’s posts: |
Cinderella66 Wed 20-May-20 22:06:41

Checks for lupus, lyme disease, fibromyalgia should be done

HoneysuckIejasmine Wed 20-May-20 22:12:01

Yes I'm wondering about lupus or bechets, or undifferentiated connective tissue disorder (UCTD). All can manifest similarly. You're unfortunate that you are young so might have to push for a rheum referral a little harder than usual. Lupus is most common in black women in their mid 30s and older. But I'm Caucasian and was diagnosed at 19 so don't be put off.

In a lot of these diseases there are specific things present in your blood that shouldn't be there, so would be good to know what he tested for.

cultkid Wed 20-May-20 22:17:52

I know he wanted a particular anti antibody test done but the GP said they couldn't do it

I am going to hunt down the paper work tomorrow
The house is a god damn mess
I am not black, but I don't understand why it seems to be an issue after I got sick when was pregnant

OP’s posts: |
BarbedBloom Wed 20-May-20 22:24:40

I have seronegative rheumatoid arthritis. I was diagnosed via xrays with my rheumatologist. I test negative in tests, but my inflammation level is raised. I was told I will probably test positive at some point.

I have swollen sore joints, usually on both sides at the same time and sometimes one first and then the other a few weeks later. I am always exhausted and get brain fog in the evenings. It started in my fingers and wrists and then progressed. I have had sore joints since I was 20 and was diagnosed at 37 when I pushed to see a rheumatologist (someone else in my family also has RA). I also get little nodules on my finger joints.

Cheeeeislifenow Wed 20-May-20 22:29:38

Psoriatic arthritis can occur with no skin issues and doesn't show up in bloods.

cultkid Wed 20-May-20 22:30:48

This is all so helpful everyone
I really appreciate it
It's making me feel less alone tonight

OP’s posts: |
pooopypants Wed 20-May-20 22:37:42

Aside from the oral.issues, I had similar for almost 20 years. I went private. Diagnosed with fibromyalgia after a 10 minute assessment.

RandomMess Wed 20-May-20 22:37:49

Another one to say could be psoriatic arthritis and plenty of other conditions that need ruling out!

OneFootintheRave Wed 20-May-20 22:43:29

Ask for referral to rheumatology. It could be Reactive Arthritis. An infection in one part of the body (for me bladder) leads to inflamed joints elsewhere.

cultkid Wed 20-May-20 23:06:12

Looks like reactive arthritis has many of my characteristics

I had pseudomonas 3, maybe 4 times I wonder if this cussed if

OP’s posts: |
TARSCOUT Wed 20-May-20 23:26:33

I have crohns and sometimes a flare is purely in my joints and not my bowel. Ulcers are also a sign of crohns.

SmellyBeard Wed 20-May-20 23:49:13

Have you had a baby? I have developed arthritic symptoms in my left ankle, wrist and a couple of finger joints after giving birth. The consultant said it would improve after I stopped BF but it hasn't. I had tests for RA but no markers. I wondered if it was hormonal 🤷‍♀️

Are you receiving any treatment or investigations?

GrumpyHoonMain Wed 20-May-20 23:53:25

I had joint pain after having a baby. Found taking breastfeeding vitamins plus 1000 iui of vitamin D3 plus upping my folate / iron intake really improved things.

KatyMac Wed 20-May-20 23:58:24

I had/have ME/FM for decades - B12 & D in huge quantities have helped along with Zinc, Magnesium, Potassium, methyl folate and Vit K

Recently added ubiquinol (sp) which is also helping

But at the same time my brother had RA diagnosed in Sweden

cultkid Thu 21-May-20 03:26:22

I've had two children and I didn't breast feed for longer then a month with my first and a few months with my second. I still have all of the pains intermittently usually after I've been sick or over tired in my joints. It's really debilitating.
I use a really great pain specialist in London but I actually had a damaged back from a nephrostomy in my first pregnancy. When I went to see him I was on huge doses of pain killers that didn't work and the NHS weren't able to or willing to give me injections in the affected areas. They wanted me to wear a fentanyl patch.
I didn't want that so I went to him. I was hysterical when I saw him and although the joint pain was a sort of issue my back was the predominant problem. Since January my joints have become more of an issue. I had the blood tests done with the exception of one that they couldn't do at my GP because apparently only a rheumatologist can only order it...
All the papers had no marks on them saying I had funny blood.
I was low in vitamin D when I was a teenagers, also anaemic, and had to have iron transfusions but I feel this is more sort of my immune system. Especially considering I've never typically had a fever, even when I had raging infections. Now every single day since February I've had a low grade fever and I would say my pain is awful in joints
I'll email the clinic tomorrow and ask them to make a plan for me but that reactive Arthritis sounds possible. I did have a nephrostomy and pseudomonas sepsis which started in the kidney but I didn't see it listed in the bacteria that can cause it. However what I do know is I had other bacteria in my blood too at the time of the sepsis but I don't know what they were.
Pneumococcal something was in there too.
It's the ulcers thing that's gotten to me

Thanks all

OP’s posts: |
snowqu33n Thu 21-May-20 04:07:24

You might also want to check ankylosing spondylitis. Doesn’t have the same markers as rheumatoid arthritis.
It goes undiagnosed for longer in women as it was thought to be more of a men’s illness in the past.
Definitely ask for a referral to the rheumatologist.

snowqu33n Thu 21-May-20 04:08:07

Ulcers can be Behcets.

cultkid Thu 21-May-20 04:35:47

I don't have the general back pain @snowqu33n it's actually sore in the middle of my back quite far up and the pain wraps around my ribs into the front of my chest

I feel sad thinking about this
My hands and feet are so itchy I've been scratching them all the time I've been awake and I've gotten hives at the tops of my arms from itching too
I need to try and write a succinct email to the clinic and leave the emotions out

OP’s posts: |
snowqu33n Thu 21-May-20 04:47:23

There are a lot more treatment options now than there were even a few years ago. Stay hopeful smile

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