I’ve been experiencing widespread body pain for c.3 years. I initially put this down to the menopause and earlier this year I started to focus on my under active thyroid - I’m not yet optimally medicated for that (takes a while).
In May I decided to seek help with my GP surgery with regards to joint pain and inflammation in my hands. The GP was confident that it was likely osteoarthritis as opposed to rheumatoid because on the non-symmetrical nature of the inflammation.
Fast forward to the autumn and my symptoms have significantly worsened: have noticed joint changes in both knees; both ankles; sides of both feet; both shoulders. I have developed boney lumps on the tops of my feet, hands and a rather prominent one on my sternoclavical joint. My joints click. I have what I can only describe as widespread bodily inflammation, which seems to extend to my breathing.
In the summer I noticed I was having difficulty turning in bed due to pain in my left shoulder/upper back/breastbone/sternum. My upper body movements are now restricted, to the extent that I have difficulty undressing, turning, reaching. Coughing/sneezing/deep breathing is also uncomfortable.
I was referred to a rheumatologist who I saw 2 weeks ago today. He wouldn’t allow me to share the notes I had prepared. He asked me some questions, examined me and got me to perform some movements. To be honest, I was so disheartened by his brash and disinterested manner that I forgot to tell him about much of the above.
He seemed completely satisfied that I have osteoarthritis, “definitely not RA”, and arranged for a shoulder x-ray, which I had yesterday. I am effectively discharged with no treatment yet I’m in considerable pain all the time.
I have a long family history of arthritis.
Been tested for rheumatoid factor, negative result. What is reliability of test? Anti-CCP negative.
C-reactive protein (CRP) low in range.
The change in the shape of my knees and my shoulders are alarming to me. They seem to protrude? But I don’t experience specific pain in these areas. I have developed what I think is a Baker’s cyst on the back of my left knee, again this is not painful.
For info I am 51, previously extremely active/sporty, a healthy weight.
I understand that there are some 100 different types of arthritis, including seronegative RH. I am going to request a second opinion with a consultant at a different hospital and will seek private advice if necessary.
I welcome your thoughts.
Many thanks 🙏
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J972
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I have RA but knew I was not right and was checked for fibromyalgia which is all over body and can be incredibly painful literally top of head to toes. Might be worth throwing this in the ring!
I’m sorry to read of your experiences and have no idea of Fibro but a private consultation might be a very good idea. If you can find a consultant who also has an NHS practice as then you can often change over because some of the RA meds are only available on the NHS. And can cost huge sums, not all but some could do. I hope you feeling better soon and a diary is often a good way to keep a record of how things change.
It certainly sounds more likely to be OA ..…especially the boney lumps…I have had RA for 20+ years & I am only now developing OA…..with boney lumps everywhere. To be honest, you should speak to your GP for some effective painkillers to see if they help.
I'm sorry to hear that your experience with your consultant was very poor. A consultant cannot refuse to accept your notes, s/he is out of order. You are perfectly entitled to forward them to the rheumatologists secretary and ask for them to be entered into your notes. They cannot refuse. My experience suggests when things are written down, care improves. Politeness and firmness go a long way. No one can know whether you have OA or RA without bloods being undertaken and reading them alongside, symptoms and other investigations, such as MRIs.
Diagnosis on a one off abrasive visit frankly means little. RA can be very difficult to diagnose.
My bloods are normal, yet MRIs repeatedly show extensive tenosynovitis. My symptoms are those of inflammation too.
A chat with your GP outlining your concerns and a request for further specialist help may be in order.
Remember lumps are not diagnostic, you can have both OA and RA, so don't be fobbed off.
I'm on med 10 or 11 now, I've forgotten 😏. I've moderate success from Filgotinib, a JAK inhibitor, and leflunomide but still take oral steroids every day too. I have extensive lumbar issues (4 previous surgeries) , extensive OA and recently had a hip replacement. I've had my share of good and not so good medics, I'm very firm with them now, take no nonsense. I see medics as any other service I pay for, I don't accept shoddy work or bullying.
I'm an ex nurse and reserach out what I want to speak about, give the consultant a written update at each consultation (I used to check that it had been scanned to my notes , but have stopped the checking up now as they always had, I've developed trust with them).
If they say things that I'm not so sure about , I do ask how they know that, what evidence they have and could there be an alternative diagnosis or treatment.
I've reached a good place with my consultant, he usually presents 2 / 3 scenarios to me gives pos / neg and let's me decide what I want to do.
If he feels something is necessary for me he says so and I take his advice no argument, but it has taken a long time to get there , with several changes of consultant en route (entering into year 8 soon). I've now got a younger more interactive guy who I paid for privately before transferring back to the NHS and his list.
Please do not accept a diagnosis from anyone on the forum 1. It is prohibited as we are not medics .....and 2. Noone can diagnose RA , other than a consultant rheumatologist (not even a GP, as you are most probably aware).
I hope things do move forward for you, but you will need a good dose of patience the world of RA moves forward slowly.
I see medics as any other service I pay for, I don't accept shoddy work or bullying.
You’ve clearly learned this through bitter experience and it’s these kinds of hard-fought insights which makes healthunlocked such a brilliant place to come for help. I’m definitely going to present the next consultant with notes. Thank you. I’m sorry to hear about everything you’ve gone through.
In some ways it makes you a stronger person, but then I've always been pragmatic and stoic and determined. A wee weep for 5 minutes....then right let's get this sorted type of person 😢🙃. I seem to need the weeping stage to get motivated 😭. You will find out a lot about yourself over the coming months.
My consultant calls me the queen of self management 😎. You gotta laugh. I think he means we need straight, honest talking, no messing.
A and E missed a fractured hip twice within 2 visits over 48 hrs and sent me home to mobilise with a walking stick. Both times the GP sent me in saying something was wrong. When the fracture was eventually found on MRI, that I requested, and GP supported, I decided to try conservative management. I hobbed around in pain for a total of 10 weeks, before having the hip replaced. The replacement was a doddle by comparison.
I've experienced a lot and been told if anything happens to my other hip, I must flag up my ability to tolerate pain...and not allow junior A and E staff to send me home. Good in some ways , but I would expect a fractured hip to be picked up ? My fracture was a stress fracture probably due to long term steroid use.
Keep focused, keep strong, polite to a fault and most importantly expect good care. If you don't you won't get it.
Your GP and rheumatologist sound like my original ones!
The first rheumatologist was very brusk, didn't listen, barely examined me, messed up on the blood tests, and decided I had OA, normal signs of ageing and fibro.
I knew I didn't have fibro as I am very familiar with the diagnostic criteria, and he didn't ask the right questions (I have no mental health issues for a start and depression, anxiety and unrefreshing sleep is part of the criteria) so I rang the secretary saying I disagree, and to point out the screw up over blood tests. I thought maybe there would be another appointment, but no, the next letter confirmed it.
I raised a formal complaint. It was upheld and I got an apology and a referral for a second opinion.
Turns out the x-ray showed spondylolisthesis which explains my back pain and the new rheumy diagnosed, psoriatic arthritis as well as the OA.
So definitely pursue a second opinion.
Just to add, my bloods don't show much inflammation. And that some believe that OA is also an inflammatory condition. And remember Hickam's dictum: patients can have as many diseases as they damn well please!
OA, RA, IA - all painful and there is absolutely no excuse for a rheumatologist to be abrupt and dismissive about any type of arthritis. I was always taken seriously due to high inflammatory markers. Mu then rheumatologist was perfectly kind but heck he was obsessed with RA and wouldn’t look for or speak of rarer related conditions such as Sjögren’s or Vasculitis, let alone my actual rheumatic autoimmune , systemic sclerosis! He blamed my knee pain on OA but I’ve only just had first X-rays of my knees, 12 years on, due to pain flare and bony lumps under my knees which seem to be growing.
cyberbarn and OldTed60 Thank you so much for your responses, they gird my loins 🙌🏼
I need to add something else into the mix this morning: I have woken with considerably less inflammation today due, quite possibly, to realising yesterday that the ‘milk’ I’d been drinking wasn’t gluten free. I’ve since stopped.
I have autoimmune hypothyroidism (known also as Hashimoto’s) and went gluten free around 6 months ago (as well as dairy free) as there’s a strong correlation between doing that and symptom relief. I’ve been tested at least once for celiacs but that came back negative so I consider myself to be gluten intolerant. I certainly noticed an improvement in symptoms such as bloating, wind 🌬 (sorry) and inflammation since cutting gluten.
However, there’s still the fact that I have changes in my skeletal system, including this horrible nodule? bone spur? on my sternoclavical joint. So there’s a lot to explore. It may turn out to be osteoarthritis but I would prefer to receive that diagnosis from someone who’s actually interested in engaging with me in a respectful and interested manner.
A second opinion seems sensible..Rheumatoid factor can be negative and it can still be inflammatory arthritis, however your crp is usually significantly raised with inflammatory arthritis.
I feel you definitely need to get your pain better managed if possible.
You shouldn't be treated like that consultant did your obviously needing help. Hope you get feeling better soon
Further to my reply, my perimenopause state caused …
I was diagnosed with bilateral supraspinatus calcific tendinopathy with associated SASD bursar thickening in my shoulders - with no tearing (conclusion from an ultrasound.
my LH shoulder was extreme pain & immobile (this particular shoulder had a large focus of calcification within the distal supraspinatus tendon). The RH was only mildly painful.
I’ve had corticosteroid injections in both shoulders and this fixed it. Since HRT nothing like this has occurred.
Although I have SP RA , but my CRP was never high. But during that perimenopause time so many weird things started happening. There’s no issue starting HRT earlier.
I had to Google pretty much everything you’ve been diagnosed with, sounds extremely painful. You have my sympathies.
Regarding the shoulder problems: was the pain isolated within the shoulder or was there referred pain? I have discomfort and restricted movement in my shoulder blade and chest.
I have a steroid injection booked for early January but I’m awaiting the results of my recent x-ray.
Have you had long term positive results from your injection then?
Thanks for mentioning HRT, I’m considering resuming it following a break of 9 months (to focus on my thyroid issues) to see what impact if anything that has on my symptoms. For info, I went through a relatively early menopause at 45 and am now 51.
I couldn’t not reply reading this, if only to sympathise. That is just appalling that the rheumatologist behaved like that. To be waiting and putting all hope in an appointment - then that! I would book a private appointment as soon as possible, it is worth it for timely help.
My RA is very often asymmetric and random as I also have pallendromic rheumatism which is equally as painful but much less damaging. The treatment is the same for both. At the moment neither are controlled but they were for months earlier in the year and my caring consultant has come up with a new plan. A caring consultant is a must! Demand a second opinion and while you are waiting see someone privately as the passing of time can be detrimental with no medication.
what did he say the bony lumps are on the top of your hands and feet! That is a significant change. I guess he decided that the lumps were not rheumatoid nodules which is a good thing! So if this is osteoarthritis what caused all the wear and tear on your body in the last couple of years??? Jeez, I sure hope that your shoulder X-ray shows something so that you can get some help. I have Psoriatic arthritis which is non symmetrical and my bloods are always all normal. Also, an ultrasound on my hands was the first concrete evidence of inflammatory arthritis with me because of increased synovial fluid and to this date my X-rays show only osteoarthritis. So if you X-rays are normal that doesn't really mean anything, just that you don't have damage yet. I was first diagnosed with fibromyalgia. Then a year later with RA and fibromyalgia and now I am said to have psoriatic arthritis and fibromyalgia. With this just know that mistakes happen in diagnosing because these diseases are hard to diagnose. Be CONFIDENT and know you have the right to question something that makes no sense to you.
Thank you very much, he didn’t examine the boney lumps, he was intent on checking my flexibility. No word yet about the X-ray. My plan is to arrange an appointment with my names GP to inform her that I have numerous unanswered questions that I’d like addressed by a different rheumatologist at a different hospital. Take care.
There is nothing more dispiriting than an unsympathetic disrespectful consultant and in my experience it is better to have concise notes for your own use during an appointment as doctors do not want to read a patient's notes.
You seem to have several conditions so before requesting a second rheumatology opinion I would revisit your GP who could decide which consultant is most appropriate as it may not be rheumatology. I have both rheumatoid & osteoarthritis and the rheumatology personnel are aware of osteo but do not seem the have any detailed knowledge of it. I had a lot of shoulder pain and they were happy to refer me to the orthopaedic department
I do hope you can get sorted as continual pain, anxiety & breathing issues are not a good place to be in.
Really good advice, thank you. I had notes on my phone, he insisted on asking his questions every time I tried to read from them or share anything outside of his checklist. I feel as if he steamrolled his way through my concerns and, you know, actual lived experience.
I’ve got an appointment with my named GP Wednesday morning.
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