I was called in to my GP surgery yesterday, by one of the GPs, the letter indicating it was for a medication review.
She's not one of the GPs I prefer to see, she can be a little vague etc. But we ended up going through my meds and she asked about steroids being on my repeat....I said that although my lupus is largely controlled by my mix of meds, I have used oral steroids twice this year, they are an emergency plan for me....so it gave me the opportunity to tell her about my left leg issue and the fact that I attended the surgery twice, then got referred to CMATS, totally wrong diagnosis by the physio there (osteoarthritis) and then ended up on a terrible state with uncontrolled pain......which turned out to be bursitis in my knee with the inflammed bursa leaking fluid....
I had telephoned the surgery at 4.50pm one evening and crying down the phone had told them that I had uncontrolled pain and I needed urgent help. I said if I couldn't see anyone there, I was intending to go to A&E. The receptionist asked me to hold whilst they had spoken to a colleague and then came back to offer me an appointment in 3 weeks time....I told her that as soon as I hung up the phone, we were going to A&E. Which we did. My first ever visit in my life for me, so that explains how bad the pain was. We were there 7.5-8 hours to be x-rayed and told no blood clot but they could see fluid around my knee and that I was too complex for A&E. Got prescribed co-codamol. In hindsight, a steroid injection into the swelling - which was hot to touch and obviously fluid - should have been considered, it's not rocket science is it?
I asked her what time the surgery shuts? She responded we are open until 6.30pm and anyone who contacts us with acute, uncontrolled pain should be offered to be seen immediately and not turned away distressed. That should not have happened to me. So there is obviously a training issue there, lots of new staff etc.
Anyway, I told her that my legs are increasingly becoming a problem. I do have OA but also inflammatory arthritis with lupus, bursitis etc, plantar fasciitis. But on and off this year, in cycles I have had issues standing up - getting up from seated. It's not my knees and it's not my hips. It's muscular...I think. I have to push myself up, pull myself or rock to gain momentum...Sometimes I can feel burning in my legs, above my knees. She gave me a physical exam and asked if there was anything else...I said I have started to struggle to raise one of my arms above shoulder height. She said there was no loss of strength - find this exam a waste of time, as sod's law when you see them, you've warmed up and you've not been sat down for 2 minutes...so no chance to get stiff.
She proceeded to tell me that there are a few conditions that effect the muscles, but I am too young for them and besides my inflammatory markers are all normal...I told her that no matter what was going on with me, my ESR and CRP are always normal....in the 10 years I have been diagnosed.
She offered to do some bloods and I agreed, so I thought here's my opportunity, I asked her about a blood test called creatin kinase...so without a second thought she added that to the blood slip...I last had it done in 2019. So at least that's something of a result from the appointment and she did give me time to talk.
Creatine Kinase Range u/L 25-200
03/2014 45
07/2014 50
06/2015 39
01/07/2016 39
02/2019 74
My CRP has only ever been 6 maximum and that's been when I've had lupus flares and am ANA positive, kidney infections, UTIs etc, chest infections and recently strep....
My ESR (normal range is 0-20? I think) - has been mainly 5, 6 or 7 - it has increased to 12 and 17, but again that's with positive ANA and various infections - so neither of these really indicate infections for me...
Is myositis symmetrical?
Anyone have similar issues and GPs still use these results for CRP & ESR as an indicator?
Best wishes
Wendy
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I'm so sorry wendy your having to battle away to get anything done for your condition. Glad your getting the specialised muscle blood test done . So important as your still having a lot of problems!.
How did your cardiology appt go?. I do hope it was helpful and you could ask everything you wanted to.
I feel like I'm battling right now. From the end of July my fatigue has been an issue, my legs, I had a chest infection and strep, then a UTI, many hot flushes and periods of tachycardia, now the last few weeks waking with a migraine with myalgia behind my eye and my ear....
Anyway, I know you understand. Any news on your appointments? (Apologies if I have asked you before and you have told me, brain fog....)
My cardiology appointment on Tuesday afternoon was postponed, as the doctor is unwell, so it's re-arranged for 2 weeks time.
Yes, i'm battling on Wendy and i'm sorry your having such a lousy time healthwise. Your body is definitely complaining giving you so many different symptoms to cope with. 🤞for those blood results. I'm sorry too your cardiology appt was postponed. Its happening a lot now!. Its good though because you can say how you've been in the extra time. Tachycardia is horrible. You may well need a beta blocker. It helped mine.
Ive found a great gp with special interest in gastro stuff and he's explained the gallbladder op to me. I know what i need to ask the surgeon now. Basically i'm just waiting for both surgeries. Its a year in Dec for foot. Thanx for asking.
Good luck for your appt wendy. Will keep my 🤞for you and look forward to your update. Xx
I recently had locum GP tell me all they needed to do was check CRP and ESR for inflammation. I told him neither goes up much in my case, and I know I have plenty of inflammation.
I often think is this PMR, myositis, part of lupus, psoriatic arthritis etc.
I was so pleased that she agreed to the creatine kinase blood test, that I did sneak a peak at the others she was requesting, but I'll ask the nurse when I go tomorrow morning for them.
The headaches can be right on the top of my head, with pain behind an ear and eye on one side, the top of my head can be tender.
I am wondering if anything will be come abnormal as I am on MMF, methotrexate, hydroxy and mepacrine - but I am still getting symptoms.
The last few weeks I’ve been waking with a headache. I get pain behind my eye and ear on the same side too. The top of my head hurts. Can be tender too. I’ve developed an aching on the forehead, side of face today since waking with a headache.
It’s tender there too. Can you see the dark shadow? It’s like a prominent vein has appeared there. Only noticed it today.
This has happened before. I have 2/3 similar veins on hair line. I’ve shown dermatologist before and he just said, what those veins? No relevance. But I have always thought these veins appear when I’ve got migraine repeatedly.
Frustrating!
xx
Vein that has appeared on the side of my face. Tender to touch and feels sore.
Get some chewing gum and chew at 1 chew per second for 2 - 3 minutes. Does your jaw tire or start to ache which stops when you stop chewing? If so, get medical advice as soon as you can - like today, it being Friday!
What you are describing COULD be GCA - and the PMR-type symptoms MAY be part of it.
That "vein" is in the temporal artery area, another name for GCA is temporal arteritis. None of those medications would touch either PMR or GCA.
Go to the PMRGCAuk forum and seek DorsetLady, or at least post with the picture, she will see it. I'm on holiday and won't be around much but she is the GCA guru, been there, done that, lost the vision in one eye before diagnosis, made the film ... Tell them I sent you!
I couldn’t get through to my GP so called 111. They phoned back within an hour and after a clinical assessment was told to put phone down, phone GP and explain 111 say urgent appointment today.
And I got through, receptionist says come straight away.
GP said couldn’t rule out GCA, so started me on 40mg of steroids. Bloods on Monday morning.
Depending on results, she’ll consider referral to rheumatology.
The irony is she said the blood test is ESR and I said that isn’t a market for me. She could see that my ESR never goes above 16/17. Plus on Monday I’ll have had 40mg on steroids for 4 days in a row.
As PMRpro has advised copy and paste this reply as a new post on PMRGCAuk forum - with any other relevant info -I will reply there -and agree it does sound very PMR /GCA ish ..
All head arteries can be affected by GCA - but it’s a bit random, so some more than others or not at all - you can see jaw [please try the test PMRpro advised], top, back and temple areas also ears and obviously eyes from the ophthalmic artery which is much deeper in head so can’t be accessed. But as that feeds the optic nerve it has the most serious implications as it can lead to sight loss. See picture below, for some reason HU wouldn’t let me attach to this reply !
I have now posted on PMR / GCA UK site and also tried my GP, now waiting for 111 to phone back as I can't access the GP. Worried about it being friday.
I also had suspected GCA referral a few months earlier but through the "eye hospital" - a dept at the main hospital. (The eye dept A&E can be phoned and visited at the weekend).
I don’t think Wales has an eye hospital let alone an A&E department at one. The nearest one is Bristol I think. I had treatment there as a child, as I grew up in Bristol. Would be interesting to know what the score is here for eye checks. I know we were all referred to a consultant ophthalmologist a few years back but they don’t employ one on this area and I’ve been told the referral letters are in an office gathering dust…
Thank you for responding and giving me advice. Much appreciated.
Have a look at this post [PMRGCA forum ] - emergency eye covering England - not sure about Wales but there should be a similar system - but now you’re on Pred hopefully you won’t-
My CRP level bears no relation to lupus symptoms; it’s only been raised when I had liver/gall bladder issues. DsDNA and complement levels much better indicators than f lupus activity (although of course we’re all different).
It's interesting isn't it marypw? But frustrating when you're telling people you're struggling with symptoms and help is being withheld.
My C3, C4 and ant-dsDNA are not markers either, plus I've only ever had two positive ANAs in 10 years, so my rheumatologist says my lupus is subtle! The bloods might be but the symptoms are not!
The gold standard test for myocytis is CT of thighs, bilateral.
Wendy, I wish I could write more but since having covid the second time my muscles are burning , swollen and so painful I think that they could split. Sometimes I actually think slicing them open with a knife would offer relief.
My bloods are always normal as I have blunted crp response.
Things that have helped me have been
Ice packs
Regularl analgesics but like you I need anti-inflammatory meds but can't take them.
Very gentle stretching
Diazepam to ease the tension in the muscles
Volterol gel
Towels soaked in Epsom salts that are soaking wet and then laid on the muscles. (I have similar UTI risks to you. I remember from previous posts, no baths etc).
Gentle mobility but like you I can hardly stand/walk do any much at the moment.
Stating the obvious....reduce as much stress as you can and me as self compassionate as you can. I suspect you have alot of fatigue as I do. If my friends phone I'm not answering at the moment, I don't have the energy.
Be kind to yourself. Is there something you can buy that will help you and give you that retail therapy oxytocin? For example, a full body soft pillow to help you be comfortable at night? I recently bought a cooling blanket as recommended by Kay and it helped me feel less shitty.
Are you getting enough protein for your muscles?
Sorry to teach you how to suck eggs. I know how informed and proactive you are. It's just you have totally described my current situation and I would write more if I could but the pain is stopping me.
One thing I have realised is that for me, laying on my mattress all day (which feels like granite), hasn't helped. It helps to get up and gently move. Although first thing in the morning is shear agony and the stairs are horrendous at any time of day.
Thinking of you Wendy, you aren't the only one. Muscular pain is excruciating.
I have to say, as an ex ED nurse I am surprised that they didn't tap the fluid in your knee and send off a culture. You could have had septic arthritis. Have they done your uric acid?
Good luck buddy, sending love. It's a completely awful situation.
Do think about the diazepam. It has helped my muscles loosen up a bit. And it's not addictive if you genuinely need it for pain. The body is like a sponge for analgesia and any meds that help pain. It soaks the medication up to the level that it needs. You're an unlikely candidate to develop a problem so I would suggest you tell your GP that another person in your shoes on this site has found a small level.of relief from diazepam. Hopefully the GP is open minded.
We're the experts with our conditions and unfortunately, if I recall, you are hardly in the best location to get the right amount of help. Although it is beautiful over there.
It was really lovely to read your reply, thank you for taking the time to respond.
I totally understand.
Sorry for the general updates, I am trying to limit my screen time etc at the moment, as I'm sure it wont help my very sore head. However, I will get back to you personally as soon as I can.
I'm grateful to everyone for their responses and sharing experiences, it all really helps.
hi happy tulip. I am responding to an old post hoping you could help with something you pu into reply to Wendy.you mentioned the thighs and ct. what would possibly show? I had thigh pain beginning of journey and huge swollen like lump red and warm and id forearm too so rheumatology said this is not fibromyalgia and ordered a scan. I was told the scan was normal besides symptoms persisting and only high dose steroids reduced it though it is still slightly there today though less so. same time inflammation could barely walk or get out of car or chair or climb stairs etc.i wasn't given the muscle biopsy I was told id have ,had ck high a couple of times and have just been unwell ever since, suspected myasthenia but also aware muscles involved could be myositis also or with especially re little finger sticking out and trembling and many problems that are not joint but muscle though both .I can also vouch for some relief years back to diazepam. years later the high dose steroids helped some the inflammation especially.
Like PMRpro says it sounds like early signs of PMR .It also sounds like your GP thought it was PMR too, but their lack of knowledge about the facts of the illness meant that she was , as many Medical Professionals do, just quoting the guidelines for PMR diagnosis by saying that you were too young to have it and you should have raised markers. Rooky mistake on the doctors part.
Many doctors instantly dismiss PMR or GCA as a diagnosis if you are under 50 because of the guidelines.
But I had confirmed GCA at 48 and there are numbers of people on the PMR/ GCAuk forum whom suffered unnecessarily with untreated PMR because it started before they were 50.
The age range is an arbitrary figure based on the average but many professionals don't recognise that maybe the only reason PMR has this age as a cut off is because of the guideline itself and people aren't being diagnosed in the 40's because they follow them not because some patients aren't suffering with PMR before 50.
What your GP may not be considering is the occurrence of autoinflammatory conditions like PMR happening at an early age to people whom already suffer with another autoinflammatory or autoimmune condition, like Lupus or with repetitive muscle and joint injuries.
The fact that I had Type 2 EDS , for example, contributed to an earlier activity of GCA for me because EDS can cause the type of wear and tear on the body including blood vessels that means an EDS physical body can have suffered the equivalent of 7-15 years damage more than my chronological age.
Are there any figures similar to these for the Lupus body?
You have mentioned in the past that you also have hypermobility and there is a family history of EDS so you too could be in the position that you could suffer conditions usually found in people in their 50's or 60's at a much earlier age.
If you see experiences on the PMR forum you also see that many people with confirmed PMR or GCA had or have normal ESR and CRP blood tests even before treatment or in a flare. These blood tests will usually rise but not for everyone , and especially for people like yourself with other conditions when your inflammation hasn't caused a spike in these blood tests before too. It would be worth discussing this with your GP and pointing these things out.
Personally , I'd request a referral to Rheumatology to get this diagnosed with a request to see a Consultant with experience of treating PMR/ GCA in people with preexisting conditions. Or , as I know you see a private consultant occasionally , contact them and ask for them to examine you for this and recommend for you to be able to try the steroid treatment which people usually respond to very quickly to prove the diagnosis.
Your treatment would still be on the NHS so the one time consultation cost would be worth it for the months lost in agony.
If you are happy to have an initial private appointment outside Wales I'm sure PMRPRO will be able to recommend the best person to go to see near you and I'm sure she would be happy for you to message her about those Specialists details.
Have you heard anymore about your Cardiac results?
i haD problems getting up from seated and got a riser chair plus a higher loo seat. Physio could offer exercises perhaps it does sound like muscular but maybe also (as in my case) a bit of a psychological block - expecting a problem. Hope you can find some way of improving c
Yes I did in preparing for knee op. She gave me exercises and massages and encouraged me. I know about the frustration you mention too. I had to stop work earlier than I’d have liked but have found some useful activities like doing an online art degree
can't help with the tests etc but the pain you have described is veeeery similar to what I experience. I have also been given the green light to take short courses of steroids when things become unbearable which I've only had to do twice in the last 12 months. The arm raising thing was how my frozen shoulder started; a massive red herring in the whole saga of my relationship with rheumatology!
Hi Wendy. I’m so sorry this has progressed to a health crisis. My words as I’ve been there. And maybe still am. Your symptoms are very familiar to me / muscle weakness in arms and legs and just had bursitis in one knee and hip Steroid injections helped and I agree with another person here about diazepam/ it gets a bad reputation as being an opiate but it was invented for muscle pain It has worked for me
I was in the hospital this weekend and learned alot more about lupus and related myositis and other goodies I had a TIA and in the hands of great emergency doctors for the weekend my takeaway was : lupus needs to relax (sorry my punctuation marks are not working) and after being referred now to different doctors/this is a never ending story with lupus/ I’m now considered for more “specialized“bloodwork for more and different diagnosis
These events are worrisome as we hurt!! And wonder really? Is this my diagnosis!??
Well after a TIA ( mini stroke for those who don’t know) I’m really for the first time totally relaxing and accepting this “thing”
I wish you hope in sound diagnostics and relaxation and rest as you wait best to you💜
"Many patients with systemic lupus erythematosus (SLE) have minimal or no elevation in CRP even during intense disease activity." You can read it on this paper 👉
Interestingly, my husband attended A&E this year as he thought he had appendicitis. I knew he was serious when he said he was driving himself there, as he is hardly ever ill and time off sick from his job is minimal over the last 25 years....When he arrived they did exam, pain was there etc, bloods and urine test. The bloods came back all normal....ESR & CRP, so they were going to discharge him and even gave him a cup of tea.....Then his urine test results came back, blood in his urine. So they decided that they'd give him the choice, IV antibiotics or surgery to remove the appendix. He chose remove the appendix, which baffled them but they agreed. I don't think it helped that he said his pain level out of 10, was about 5-6...Anyway, long story short, after waiting 5-6 hours for that cup of tea to go through him, they took him to theatre and the appendix was huge, about to pop and very messy. The surgeon told him she was glad he'd chosen surgery, the IV antibiotics would not have worked, it had gone too far. I was so relieved that the blood showed in his urine ,we were due to go to London for the weekend on the train and if it had popped then...I said to him, now you know how I feel when my bloods are normal and people are suspicious!
Blimey 😧… that’s a story ! I wanted to reply my lovely as I’ve never had raised ESR or CRP. I was hospitalised with cellulitis of the leg/ borderline sepsis for 4 days and apart from liver function bloods were normal 🤷♀️ .
I’ve got the OJ antibody and PM scl75 which I think can be myositis . Have you been tested for those ? That muscle test is useless cos how did she know how strong you were before ! I totally understand the leg situation . It’s a horrible feeling isn’t it ?😒. Mine have started to feel like sponges 🧽 unable to support my weight especially in the am/pm .
My CK Is never dramatic or raised either . I know this isn’t much use but wanted you to know you can have symptoms without the corresponding bloods .
Sending you a big hug 😘. Please keep us posted if you can on results xxxxx
Thank you Tiggywoos, much appreciated. It validates how I am feeling and what I am experiencing too - one of the main reasons to seek support here, everyone gets it. Interesting about your CK too. I'm not holding much hope, as my lupus barely shows in blood tests and plus I'm on medication which could skew the results too?!? xxx
Totally agree about medication . I remember a dr writing in her letter “ we’ve repeated bloods today but unlikely to be insightful as patient on tapering dose of steroid “ .
I totally get it .. hate to say it but the gas lighting too 🤦♀️🤦♀️. My physio also said the other day that some patients he sees can hardly move with muscle pain but never show inflammatory bloods xxxx
Phyios tend to be very insightful...I paid to see one privately earlier this year when trying to find out what was happening with my legs, as above. He'd done my physio after my hip and knee surgeries. He knew straight away it was soft tissue/muscle inflammation. He said I'm not getting bogged down on what is inflammed, bursa muscle whatever, it's red, hot and painful. He wouldn't even touch it. xx
Wendy, I have UCTD with features of Lupus, Dermatomyostis and Sjogren's. My conditions were diagnosed by symptoms and a consistently positive ANA which swings between 1:80 to 1:640. All other bloods are normal and no matter how bad my symptoms, with obvious pain and inflammation, my CRP and ESR remain unchanged. Actually only once did my CRP rise to about 10 in a particularly dodgy flare.
I've just had shingles. with much inflammation and very rare complications, and the inflammation markers remained unchanged. I have been told repeatedly by the rheumies I see, that some folk just don't register in their bloods.
My lupus and dermatomyositis symptoms, which affect my joints, tendons, muscles and skin, are always symmetrical, astonishingly so. I display no muscle weakness in my thighs and upper arms but it's sometimes tricky to lever myself up to standing and also difficult to hold my arms up for any length of time. I've learnt to clean my teeth with my upper arms by my side for support. 🙄
I see or speak to my rheumy about every 4 months. My local hosp has a system set up with long term condition sufferers to be able to email requests for help as and when needed which works brilliantly for me. If I need a Depo Medrone jab I just email a request. Whilst my GP practice is excellent, this sort of 'stuff' is beyond them. I've learned to research and then inform them what is happening and what should be checked. I've learnt to drive everything. Indeed whenever a new, usually bizarre symptom occurs, the GP always advises a direct approach to the Rheumy to deal with. It's totally frustrating to have to always drive everything but it's the only way to achieve a result.
As you well know, so many of these CTD conditions overlap, maybe myositis has joined your collective. It's all such a bore isn't it!
I hope you find some answers and send you all good wishes.
I had some bloods done on Monday, yesterday morning and my GP telephoned me after 3pm with the results. Not so much my GP but the one who is handling this issue, I mean not the one I would have chosen. So she said ESR is normal - 11. So as I had seen some improvement but not complete improvement (after only 3 doses of 40mg!) she wasn't sure what to do with me. As she didn't want me to 40mg unnecessarily. She agreed to speak to a unit at my local hospital and get back to me. So she did and I was told to go straight away. It was a Same Day Emergency Care - SDEC Unit - which to me looked like it was also a Minor Injuries unit next to A&E - as all 3 were signposted to the same area - and same reception?! talk about confusing.
I saw a doctor from A&E in the end. She was lovely, quite young and prepared to listen. I said I'd been living with lupus diagnosis etc for 10 years and headaches since I was 12, now 49. This was a new type of headache symptom. Tenderness on top of my head and a painful, sore, tender vein at the side of forehead, eye, on my right side. I'd had fleeting pains through head and eye and ear (eye and ear very common for me) but overall this overwhelming feeling that an almighty headache was about to erupt at any time - although with the 4th dose of steroids on Monday, that too was easing slightly. So some improvement but not complete. She said that they still couldn't rule out GCA. Although my ESR was only 11, it's not an accurate marker for people on methotrexate, which I had never heard before and I told her about my ESR and CRP not being accurate for me anyway. She said that biopsy was no longer used for this, as it is possible to not get the right sample in the right place and get a wrong result. She said a scan was just as reliable and less invasive. She said I'd have an urgent referral to rheumatology and be seen within 2 weeks. However, she then told me that my county - Pembrokeshire, currently has no rheumatologists and therefore they are relying on a visiting one, for a day a week.....In the meantime, to stay on the 40mg of pred.
I am so upset angry and disappointed AGAIN, at the terrible rheumatology and lupus care here in Wales.
Dr F who saw me at the Same Day Emergency Care Unit at my local hospital phoned me., for follow up. She spoke to Dr A, who is a local rheumatologist, but running the local support group I know how bad he is. He tells everyone they no longer have lupus and takes their meds away, he tells everyone they have fibro, he says post menopausal women do not get active lupus etc etc etc.
He says it’s definitely not GCA. My age (I’m 49 and risk is over 50 for goodness sake) and my history of migraine with aura (my migraines have been controlled by meds last 2-3 years or more and I've never had aura!) and ESR at 11, definitely not GCA.
No appointment and no scan or further investigations. I'm to come off steroids from 40mg dropping by 10mg a day until off, so tapering over 3 days.
End of story. You couldn’t make this up.
I'm no expert and I am not saying that it's definitely GCA but I think my symptoms warrant further investigation and so did my GP and so did Dr F before she spoke to Dr A.
I questioned Dr F on the ESR, as she told me that ESR is not accurate when on methotrexate and her reply was that Dr A disagrees with that.
So I am left wondering what to do for the best and feeling very alone and vulnerable. I should be used to this by now, but it never fails to amaze me how shambolic care is here.
I am hoping that I can get a response from my private lupus doctor in London, re what I should be doing.
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