Fibro 'diagnosis' confirmed as enthesitis by rheumatologist - very confused! Lyme?

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Hi everyone :slight_smile:

Thank you for accepting me on to your site.

My story is long - Iā€™ll try to keep it brief!

I am a 46 year old woman and until 3/4 years ago I considered myself active and healthy.

Almost overnight, my body seemed to age :confounded:

I noticed stiffness in the morning, after any prolonged activity and after sitting/resting.

First thing in the morning, the soles of my feet feel like Iā€™m walking on glass though this wears off. They hurt again if I do any walking lasting more than 20 minutes or so.

I developed a severe ache in my right flank and rib cage area which I still have to this day - it varies in intensity on a daily basis but is always there. It feels like sore, aching muscle but I also sometimes get a feeling of pressure/tightness.

I have upper back pain most days.

I am very tender all over - lots of me feels ā€˜bruisedā€™.

I struggle to bend, put on my shoes and use stairs.

My sleep is hit and miss - I have a week or so of sleep with no problem followed by a week or two of not being able to drop off at all.

I have occasional night sweats (once a fortnight or so - I could just be hot!).

I have occasional blurred vision and have developed tinnitus.

I have swollen/tender lymph nodes in my clavicle, jaw and armpit.

For all of the above I have been scanned, x-rayed and had blood tests. I have seen a number of specialists. Every test comes back as normal.

My periods suddenly stopped 2 years ago at age 44.

I was diagnosed with under-active thyroid in 2013 for which I currently take 75mcg Levothyroxine.

I had a slight vit D deficiency which had now normalised.

In April, my GP suggested that I may have fibromyalgia which actually seemed to make sense to me. The tenderness, stiffness, lack of sleep all made sense though I never suffered with ā€˜fatigueā€™. To confirm, the GP referred me to a Rheumatologist and after a six month wait I finally saw her on Monday.

She asked me my history and did a brief exam. No, I do not have fibromyalgia. Owing to the fact my mum suffered wuth psoriasis, she diagnosed that I am suffering with enthesitis relating to psoriatic arthritis - but that I do not have PSA.

So, I am a bit lost! Enthesitis on itā€™s own does not seem to exist. All research I do relates it to PSA. So how can I have it but not have it at the same time?

I was so pleased to finally get a diagnosis after all this time but it seems I am no further forwardā€¦
She told me to take ibuprofen when Iā€™m in pain, yet Iā€™m in pain with limited movement all the time! Do I therefore take Ibuprofen for the rest of my life? And I have actually tried this in the past (off my own back, in search for some respite, and it didnā€™t help!)

Further to this, I asked her about the possibilty of Lyme Disease as I did suffer a tick bite approximately 3 years ago and suffered an awful rash but she said you canā€™t get Lyme in this country - this is obviously not correct :smirk:

Any input from you guys on here would be most welcome.

Apologies, for the long drawn out history above :blush:

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Hello Mrspinkrat, and welcome!

Iā€™d be confused too. Could it be that your rheumatologist means that you do technically have PsA but at this moment in time it does not seem to be affecting your joints as much as it is the entheses? If you were given a helpline number (often staffed by rheumatology nurses who can be very helpful), perhaps it would be worth giving them a ring with your question. Or alternatively you could write to your rheumy asking for clarification. Additionally, if you are due to receive a follow-up letter then that might shed light on the matter.

Admitting my ignorance here, but I do not know whether PsA drugs (DMARDs such as Methotrexate, biologics) do much for enthesitis. I think they do but Iā€™m not sure. But in any case if you do actually have PsA then prevention of joint damage would seem to be the way forward. You definitely need a little more explanation from your rheumy team. I tend to think that anyone with fairly severe symptoms would need a fair bit of persuading that Ibuprofen alone was adequate treatment.

Iā€™m in the UK and was tested for Lyme, though my rheumy said the chances of having it were slim. My mum was tested for Lyme about 40 years ago so yes, of course it is possible to get it in the UK. If you politely insist on having the test your doctor may oblige. Not sure how useful it is 3 years after a tic bite ā€¦

You have made a bit of headway and that can count for a lot! With one foot on the ladder clarity should be possible in time. I hope that happens soon.

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Hi there. Keep searching and donā€™t get discouraged. Easy to do so. My joint aches and stiffness came long before the rashes that led to eventual diagnosis. No two cases of this are often alike and symptoms, time of onset, etc can vary greatly. That is what I found when I researched it all. Confirmed by my rheumy. I hope that you will find answers soon as we all know how frustrating it gets.

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Wow, Mrspinkrat, my unprofessional diagnosis is PsA and it really IS PsA! But, who am I but a victim with almost exactly your same symptoms!
Keep pressing for answers, it sounds as if the rheumy is confused. If you look back over the years, do you remember, despite feeling healthy MOST of the time, having some ā€œflaresā€ of weird aches and pains that you did or didnā€™t doctor for and that cleared up without much concern? I was diagnosed with PsA in my mid 50s (about 2 years after my period stopped!) with the enthesis being one of my biggest symptoms. But, unlike you, I had moderate psoriasis since my 20s. But the mild swelling-all over-with resulting stiffness all over, was horrible!
Your foot pain sounds like classic plantar fasciitis, which I had in my early 40s also, and I highly recommend you look further into that and start treating it asap.
Every time I get a chance to read a newbieā€™s intro (which I have less and less time for these days) it reminds me of how I felt and how so many members here have described their symptoms awhile back, and I just want to tell you there is hope!!! Iā€™m sure at this point, relief canā€™t come soon enough for you! I started Enbrel 2 years ago (I live in the USā€“I actually declined meds for several yearsā€“afraid of possible SEsā€“so my rheumy and dermatologist were able to get me straight to Enbrel finally when I couldnā€™t fight the pain anymore) which was a LIFESAVER!
Sorry to hear of your suffering, but hang in there and keep pushing for a firm diagnosis and more than ibuprofen for your pain/symptoms. I felt exactly like youā€“I didnā€™t want to take pain pills 24/7 ā€“ thatā€™s just not safe and it doesnā€™t help that much, anyway! Good luck!

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Hello Mrspinkrat

Oh, I do like your screen name. :wink: Your symptoms certainly sound very much like PsA, and Iā€™d be inclined to guess in the same direction that Sybil did: your doctor is saying that PsA is affecting your entheses, but not your joints at the moment. But just wondering: you say she did a ā€œbrief examā€. Did she palpate all your finger joints, one by one? If not, how could she know whether your joints are involved or not?

Every test coming back normal only means that every test came back normal. Half of us with PsA are like that ā€“ blood work can be normal, even in the presence of significant PsA inflammation.

PsA is a very tricky and slippery fish to catch. Trust your body, and keep asking questions until you find a doctor that tells you something that makes sense, whether thatā€™s PsA or not. You are not crazy, you are not imagining all of this.

You say that youā€™re in the UK. We have many UK members, who know quite a lot about centres of excellence, NICE guidelines, and the names of good docs. Can you be a bit more specific about where you are?

Weā€™re glad that you found us, and we hope that you are too.

Seenie

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Hi there
Thank you for your reply :slight_smile:ļø
ā€™Mrspinkratā€™ comes from a lovely little female rat I used to own, which was white all over but with pink eyes and nose :mouse:!!
Yes, she palpated each finger (the rheumy, not the rat!) and asked if they were painful/tender, but they are one of the few parts of my body that actually are not :sweat_smile:
Iā€™m in the Midlands in the UK
I hurt all over and each day/month that goes by Iā€™m getting less and less mobile.
I feel kind of abandoned and a little disbelieving that after 3 years of life-changing pain Iā€™ve been prescribed ibuprofen :disappointed:Xx

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Hi Grandma_J
Thank you for your reply.
Itā€™s good to know there is hope. Can I ask, should the inflammation be visible? No part of me is swollen (hands, feet, fingers all normal size!) except possible swelling around my clavicle/lymph nodeā€¦
Iā€™ve been pretty healthy up until 3/4/5 years ago. Occasionally, Iā€™ve suffered with an ā€˜inflamed colonā€™ but Iā€™ve had that since I was a child along with asthma and allergies. I take medication for hypothyroidism.
Or when they talk about ā€˜inflammationā€™, is it meaning internally?
Thank you for your help :slight_smile:ļø Xx

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Thank you Sybil :slight_smile:ļø
A return visit to my GP is definitely on the cards.
I would be happy to accept the diagnosis but know for a fact ibuprofen isnā€™t the answer for me :disappointed:
Which in turn makes me doubt the diagnosis!! Eeek!!

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Thank you Michaelwesley
I think that Iā€™d pinned all my hopes on a ā€˜cureā€™ by the time my appointment came round. My life has been on hold for 3 years. I feel like a grandma to my 10 year old son, not a mum. I push myself physically. 4/5 years ago I could run around and play football with him. Now I can hardly get up and down stairs :disappointed:
Now, I feel like Iā€™m moaning because there are people out there much worse off than meā€¦
Xx

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I understand completely. We want our lives back immediately, at least I do. Will take time unfortunately. I have had to resign myself that I am going to take that hike again to the mountaintop but it is going to be delayed a bit. Not easy but necessary.

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Yes, well ā€¦ hmmmm. I had that too. My first rheum did the finger twiddling thing and said that my finger joints werenā€™t affected. Therefore my disease was mild. Meanwhile, I felt like a bag oā€™ dirt (or worse). The good people right here on this community pushed me to get a second opinion. I finally did, at a specialized PsA clinic, which is like your centres of excellence. There, the doc examined my fingers with great care and precision. ā€œIā€™ll tell you what the problem isā€ she said. Apparently I had something like 8 joints that were inflamed and swollen, one very badly. But I did not flinch when she squeezed and pushed and then crunched down on them. Apparently I have a very high tolerance for pain. Her assessment was that my disease was severe. I got a whole different treatment protocol, and that turned my disease ā€“ and my life ā€“ around.

There are PsA centres of excellence in Leeds and in Bath. Our UK members can tell you about them.

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Mrspinkrat, I was in Shropshire till recently. I had an excellent rheumy, will message you with details just in case you might wish to seek a second opinion (euphemism for 'getting a new rheumy!)

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Ah yes, I remember that line of thinking! There are people who are blind, and quadriplegics, and people even worse off than that! True. But does that mean you shouldnā€™t push to be as well as you can be?

Push. Yes, I know. Itā€™s hard to push when you are sore and tired.

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Thank you very much :slight_smile:ļø Xx

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Yes, inflammation thatā€™s inside really isnā€™t visibleā€“I had inflammation in my lower back and SI joint, and Iā€™m pretty sure there was swelling inside. The swelling in my hands and feet was very subtle. I could see it in my knuckles, but I didnā€™t realize my feet were swollen until the swelling went down after I started Enbrel and they got skinnier! Did your rheumy actually tell you there was no swelling? We all have so many different symptoms of varying degrees, Thatā€™s why doctors need to be open-minded. There definitely isnā€™t 1 specific set of symptoms that is a yes diagnosis, but you have so many of the classic aches and pains.

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