New, seronegative, and feeling awful!: Hello everyone... - NRAS

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New, seronegative, and feeling awful!

8 Replies

Hello everyone.

I have only just been diagnosed with an inflammatory arthritis (not really sure which type as yet). I have had three intramuscular shots of steroid, shots into the shoulders, and have just had my sulfasalazine increased to two tablets three times a day. Started meds in May this year.

I have felt totally exhausted, and my Achilles tendons are very swollen and extremely painful. I became really unwell after having bilateral partial knee replacements June of last year. This was for osteoarthritis. My inflammation markers became extremely high, and I was eventually seen by a rheumatologist. I had been complaining for some time that I was feeling unwell, but I think having no markers for the illness complicated things as far as a diagnosis was concerned. Plus I think much of my symptoms were put down to my mental health problem.

I don't think I have ever felt quite so exhausted! The illness causes serious mood problems too. I am also diagnosed with bipolar disorder, which somewhat complicates the issue.

Question 1. Does anyone else feel that the illness has changed their personality? I think being in chronic pain has changed the way I think and feel.

Question 2. Does anyone else have problems with Achilles tendonitis?

Question 3. And Bakers cysts? I have had two, one on each knee. Both burst and caused spectacular haematoma's!

Thank you.

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8 Replies
PFKAAde profile image
PFKAAde

Hi NettieC

Welcome. 🙂

I can only give you my answers to your questions.

1) Absolutely. I went from being a party animal to an angry recluse. I didn't stay like that for too long, but chronic pain and fatigue most definitely messes with your head. Depression and chronic pain are very good friends. Finding the positives is hard, but can really help.

2) I don't personally but some forms of inflammatory arthritis do affect tendons and the tissue that connects tendons to bone.

3) Baker's cysts are quite common in RA I am told. I was investigated for query DVT many moons ago and was told then that it's probably a Baker's cyst, people with RA get them quite commonly. I had a scan and didn't have them (and in fact never found out what caused the pain and swelling in my calves / back of knees, it just went away eventually).

All the best.

Ade

earthwitch profile image
earthwitch

I definitely get achilles tendonitis (and plantar fasciitis, and a whole lot of other areas of enthesitis - which is when you get inflammation at the point where tendon joins onto bone. For me this is part of my ankylosing spondylitis, which is a seronegative inflammatory arthritis of the spondyloarthritis family (psoriatic arthritis is another version of it. Sounds like your rheumatologist might have been thinking of spondyloarthritis by putting you on SSZ, as that is quite commonly tried first.

in reply to earthwitch

Thank you for your kind reply. I have had all manner of symptoms, including back pain. This started in my thirties with pain in the mornings. I am now in my fifties. I feel like I am at least 90 years old!

Seenie profile image
Seenie

Nettie, as others have said, what you describe (right down to the problems with depression) is typical of inflammatory arthritides. I'm interested in your achilles tendon problem. Do you or anybody in your family have skin problems? Skin and achilles tendons sound unrelated, but achilles tendinitis is typical of Psoriatic Arthritis. If you have any kind of skin or nail issue, or if anybody in your immediate family does, please tell your rheumatologist and ask for a referral to a dermatologist. My seronegative arthritis turned out to be psoriatic arthritis when somebody figured out that my dry skin and toenail "fungus" was, in fact, psoriasis. People have been known to be diagnosed with psoriatic on the basis of one manky toenail, what they thought was dandruff, or one little patch of intermittent skin irritation. The skin problem can be very mild and minor, and yet the joint disease can be severe. The odd person is diagnosed with psoriatic arthritis without having skin problems at diagnosis, but when the doctor finds out that others in the family have psoriasis. The skin issues usually follow.

I hope you're feeling better soon!

in reply to Seenie

Hello there, and thanks for replying. Interesting about the toenail fungus you mentioned...all my toenails fell off! I did mention to my rheumatologist, but I see in the letters she sent my GP that she said I had no indication of psoriasis. However, with the toenail issue, I have also had weird rashes, itchy skin and rashes on scalp. I will mention all this again to my doc.

Seenie profile image
Seenie in reply to

Ah ... the thing is (sorry to say) that rheumatologists usually don't know much about dermatology. I remember seeing a study about PsA diagnoses. The people who had psoriasis and mentioned their aches and pains to their derm got a diagnosis more often than the people who went to a rheumatologist and had incidental skin issues.

If I were you (which, of course, I'm not!) I'd be asking my GP for a referral to dermatology. The complaints might seem minor right now, but even a very mild case of psoriasis could be crucial to your diagnosis and treatment down the road.

The good news right now is that, in the beginning anyway, most types of inflammatory arthritis (whatever kind it is) is treated the same way.

I never did answer your three questions:

1. I really struggled with depression and once I was diagnosed with PsA I realized that the severity fluctuated with the state of my arthritis.

2. Yes

3. Oh yes. I had a Baker's Cyst so big that it ruptured and produced so much fluid that the fluid went into my calf. The docs initially thought I had a DVT. The calf has never returned to its original size and shape.

Thank you for the response, and for the information.

dobsey profile image
dobsey

I think RA does change your personality as it certainly changes your life , as you can get depression with it but the big thing is it shows you that you are not in charge and that you are vulnerable and you are not capable anymore of certain everyday tasks without excruciating pain

I just had cancer removed from

Inside three weeks ago and the following week I had a massive heart attack

Unrelated though , and I tell you , my whole personality has changed again near on instantly

Illness wakes you up to the fact you are not invincible and that life is borrowed time

After the heart attack I have become so much more caring about people and my worrying about the future has gone

Illness has shown me I am exactly the same as everyone else , vulnerable , not the big strong man I thought I was

While in the cardiac ward last week I could see guys like me who had just come in and family all around them

But no one could see how frightened they were which was quite obvious when you chatted when visiting was over

Serious Illness is awake up call and RA is an awful disease , but thankfully we have wonderful drugs like bio meds which are miracles in themselves

Good luck and I hope you find the right meds for you

David

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