What does this sound like to you all, I’m at the end of my tether?

[sweetkitty]

Like a lot of people I’ve been in pain for a long time, been fobbed off by HCPs and the NHS, feel like a total hypochondriac.

I had 4 babies in less than 6 years, had SPD and SI pain in each pregnancy, SI joints have always been painful since. About 8/9 years ago I was diagnosed with fibromyalgia. I have chronic fatigue, chronic migraines, pain, especially in my neck shoulders, ribs, lower back, SI joints, hips, inside of my knees and the soles of my feet.

Getting out of bed in the morning is agony, I’m all seized up and stiff, takes strong painkillers and about a good hour for me to get mobile. I’m ok if I’m on the move but if I rest, sit etc I’ll seize up. Rolling over in bed will have me crying out in pain. Full nights sleep is a thing of the past.

I’ve seen osteopaths. Chiropractors, private doctors, finally had an x-ray last year which showed mild wear and tear arthritis typical with age (I’m 50) but shouldn’t be causing my pain.

My brother has AS and is HLA-B27 positive

Ive now had a rash on my elbow/arms for 6 weeks which the chemist has said is psoriasis, haven’t managed to see my GP yet, I’m sure she thinks I’m making all the is up, I’ve cried many a time in her office. My DH is less than sympathetic so are my DC as I’m always sleeping I work FT I am exhausted.

Do you think a private rheumatologist and MRI is worth it, the last time I went to see a private pain consultant he made me feel like an idiot and sent me away with a website address and a bill for £400, I’m desperate I can’t live like this anymore

I have psoriasis and, with it, psoriatic arthritis. It is an inflammatory arthritis and it’s sero-negative which means it doesn’t show up on blood tests, although a lot of GPs and hospital doctors don’t seem to be especially knowledgeable about this.

Sorry, posted too soon.

I was started on biologic injections by Dermatology a few years ago, and this treatment helps me with the symptoms of both psoriasis and psoriatic arthritis.

Or you could ask your GP for a referral to Rheumatology and try that route.

Have you had your thyroid tested? Hypothyroidism has a wide range of symptoms, including pain and joint problems. Also have you considered HRT?

@Flowerfairyhad my thyroid tested my bloods always come back perfect. I’m on HRT too.

@TheAutumnCrowi do think I need to re referred but I feel like such a hypochondriac. People see me and like I look perfectly healthy and there’s nothing wrong with me.

@TheAutumnCrow I have been diagnosed with Psoriatic Arthritis. I started experiencing joint pain when I was 13 and finally got a confirmed diagnosis when I was 40!

As already explained it will not show on a blood test so diagnosis is tricky. As you have clear signs of psoriasis (mine was minimal and hidden in my hair) this could be worth pursuing.

In the mean time try and get some Naproxen from your GP to help with the inflammation.

My brother also has AS and I have RA although sometimes it behaves like psoriatic arthritis. You need bloods and to see a Rheumatologist

Oh! One of the ways I was initially diagnosed was by getting a depo injection of steroids if it helped my pain then it was likely to be ra

Get your blood calcium levels tested. If they are high or near the top of the range ask for your parathyroid hormone to be tested. You could have hyperparathyroidism which is nothing to do with her thyroid and can be cured with an operation.

Sorry to read this OP. Hope you don't mind but I'm following as am suffering very similar symptoms. Could you possibly update if you get anywhere? I've just moved to a new GP due to a house move and they've stopped all my pain meds that i'm used to help me struggle though the day. Nobody has ever suggested an auto immune issue to me and my pain has gone on for 12 years now. When the SI pain started I was almost suicidal. It is utterly crippling. GPs won't even acknowledge the SI joints. I'm going back to new GP armed with an analysis by ChatGPT after reading this. Good luck.

OP your SI pain with psoriasis is a hallmark symptom of AS.

Have you been tested for HLA-B27? Even if you’re negative for HLA-B27 you could still have AS. This could be helpful: https://nass.co.uk/your-as-journey-src/getting-diagnosis.html

Why hasn’t your GP referred you to a rheumatologist with your family history? A rheumatologist would be aware that AS doesn’t always show on an X-ray until the later stages and can also not show on blood test as per: https://www.nhs.uk/conditions/ankylosing-spondylitis/diagnosis/

About 8/9 years ago I was diagnosed with fibromyalgia
Who diagnosed this?
It's something that should only be diagnosed IMO when everything else has been ruled out because once you get that on your medical records they stop looking.

Have you ever seen a rheumatologist?
It does sound auto immune, but not rheumatoid arthritis which is what I have. Have you ever been treated with steroids and did they help?

This is what I was going to suggest.

I’m just going to my medical centre to pick up a prescription for ABs and steroids.
A really bad few years of Covid and Long Cobid exacerbated my asthma and my breathing is very temperamental.
However, I’m going to book an appointment for next week to talk about my main issue, of over 30 years, PAIN!
I haven’t slept properly since before Christmas. I had a virus, and since then my skin has erupted, psoriasis and rosacea.
There is not one joint in my body that doesn’t hurt at some point during a week.
Today it’s my left hip, knee, ankle and shoulder though my right hand doesn’t like being left out, same for my neck and right shoulder.
I have been to audiology this morning, oh yes, I’m deaf too, and now I need to walk the dog.
Im taking painkillers like there’s no tomorrow abd nothing works.
Family history of osteoarthritis and RA, son has AS.
I have had every bloody test, all normal levels.

@sweetkitty
ive just sat down with a cuppa before I attempt to walk the dog and while having a browse of MN I found you and others!
I am going to make the appointment and then study and get all my medical ducks in a row and ask for some help!
Huge thanks xx

I’ll try and answer all your questions-
fibromyalgia diagnosis was by a rheumatologist but oh it must be over 9 years ago now.

I didn’t know about my family history then, my brother’s rheumatologist has suggested I be tested for HLA-B27 as I have a 25-50% of being positive but that doesn’t mean having AS.

I take dihydrocodeine, naproxen, amitriptyline and sertraline as well as a load of vitamins and turmeric ph and HRT. I’d I didn’t take painkillers o would be able to get out of bed.

I had 4 babies in less than 6 years and had SPD in my hips and SI joints I feel my SI joints have never recovered. They are painful to touch that are, a pelvic floor is painful. Pains shot down into my groin, across the front, then down my right leg, often tingling at night.

The worst thing is not being listened too. Sent to physio yet again told to go exercises and yoga, I’m not overweight so they can’t use that as a stick to beat me with which I know they often do with other people. (lose weight and your fibro will get better)

I'm so sorry you're not being listened to. In your shoes, I'd want a diagnosis so that your pain is taken seriously by your family and work.

The first port of call is getting your GP to order a HLA-B27 test based on your family history and refer you to a rheumatologist, or if you can afford it go private to expedite the process.

Instead of leading with the fibro diagnosis and the SPD in pregnancy, I'd lead with wanting to be tested for AS in order to rule it out. Clear and brief: your pain is not being managed and you want to find the root cause.

Key points:

My brother's rheumatologist said it would be helpful for me to have a HLA-B27 test for AS in order to rule it out.

My pain is not being managed and I want to be referred to a rheumatologist in light of my brother's diagnosis.

I have psoriasis and am concerned this could be connected to AS or psoriatic arthritis.

If your GP doesn't take this seriously, ask to see a different GP and write to the practice manager.

I really hope you get some movement on this and are listened to.

I did this quick test and went to the GP, referred to rheumy, only took a few weeks, had MRI, bloods PSARC (rheumy does this every visit) and diagnosed with PsA later that year.
i also have fibromyalgia and chronic fatigue.
I am 54 and just approved for ill health retirement (yesterday) as it’s all to painful and tiring to work, live and cope.
good luck but please do see your GP asap
https://www.psoriasis.org/psoriatic-arthritis-screening-test/

So update - seen GP she prescribed steroids for my rash, she thinks it’s not psoriasis but dermatitis 😵‍💫
Asked for a rheumatologist referral she said she would “write” to them. I have to have my bloods for HLA-B27 and other rheumatoid markers such as CRP.

Also changed painkillers, so far I’m still in a lot of pain. I felt the GP was quite dismissive, I told her the pain is really affecting my quality of life, I used to be ok of if I was at work as I don’t sit down but now it’s escalated and I’m in pain at work. Night time and when I’m asleep is the worst.

@sweetkitty I have AS. I'm HLA-B27 negative and CRP/ nothing else shows in my blood. Was diagnosed 9 years ago, but had it for much longer.

If you'd like to ask any questions, fire away.

have you been checked for lymes and lupus?

@Notaboutthebassthanks
I’m in so much pain tonight can’t sleep despite painkillers. Anytime I research my symptoms AS comes up as needing investigating. The worse after resting/first thing in the morning and waking at 4-5am in pain apparently are give-away it’s not mechanical or fibromyalgia.

Bloods were all normal and I feel the GP thinks I’m just looking for something that isn’t there. I’m still waiting on the HLA-B27 result.

Did you have a MRI to be diagnosed? Do you have swollen joints? What actually helps?

@sweetkitty Sorry you're really struggling.
I had an MRI which diagnosed me, that was after not being listened to for years. Physio put it down to muscle pain and made it worse, they finally said 'you want a scan don't you?'. I'd told them that ages before.

I had years of being on Naproxen, which worked wonders but I was worried about the affects on the stomach so I've been on biologics for nearly 4 years now. I'm on my third type, as after a while they stop working. I'm just waiting to have more scans, as I feel my condition is worsening and then to see what rheumatology do going forward.

I think you need another opinion and insist on a scan.

My my main area for pain is my sacroiliac joint. I do have problems with other joints but rarely get swelling, sometimes in my fingers but I'm unsure if that AS or wear and tear.

I’m really sorry you’re going through this OP. It sounds to me like it could be PsA, which I have. Or AS. Your GP sounds very unhelpful, based on your family history and symptoms I’m surprised they’re not referring you to the rheumatologist.

My psoriasis was misdiagnosed as eczema for years by a GP.

Unfortunately, I think once you have fibromyalgia on your medical records, doctors often blame every symptom on it and don’t investigate other causes. It took me a few years to get diagnosed with PsA- I was told it was ‘aches and pains’ due to having a baby and pre-menstrual syndrome because I had a history of period problems. I also know a couple of people who were diagnosed with fibromyalgia but turned out to have an autoimmune arthritis, it did take a long time for doctors to take an interest in investigating the symptoms.

Do you have any nail symptoms (psoriatic arthritis often has nail manifestations, mine look like tiny pickaxe dent ‘pits’ in my nails). Is there any visible swelling or redness on the affected joints? I only got taken seriously when my finger joints became very swollen, hot and red. I ask this because unfortunately, some doctors won’t take it seriously until there’s something to physically see if you see what I mean.

Can you ask to see a different GP? Or even pay for a private rheumatologist assessment? I really hope you get some relief soon OP.

I would see a private rheumatologist and make sure it’s one who has a specialism in psoriatic arthritis - they aren’t all knowledgeable. I was diagnosed via nhs despite negative blood tests and nothing showing on X-rays or MRI. A good rheumatologist should be able to feel the swelling which mine did.

Hi op,
I could have written your post.
4 children and it was the 3rd one 8yrs ago that really messed me up.
2years ago I'd had enough of the pain and started trying to get somewhere with a diagnosis.
I ended up seeing a private rheumatologist (who also had a nhs clinic) as although I was hla-b27 negative, my symptoms were classic AS.
He then explained that I meet the criteria for an MRI on the NHS (as per NICE guidelines around having these symptoms) and put on his nhs list. Fast forward and the mri was clear, diagnosed with fibromyalgia.
However, I took up the offer of seeing the pain clinic who then also diagnosed SI joint dysfunction (which had triggered the fibro). 2 weeks ago I had 6 steroid injections into my SI and facet joints....the relief has been amazing, not 100%, but a marked improvement. But....a lot/most of my pain stems in my coccyx and that is still screaming at me, so I will be contacting them to see if I can have injections there too. Am hoping the fibro symptoms will be lessened by treating the root cause.
My advice....see a private rheumatologist who also has a nhs clinic as it sounds you will be 'entitled' to an mri under nhs guidelines.
Then go from there.
I wish you all the best, dealing with chronic pain is debilitating and only really understood by others who suffer, so my heart goes out to you.
I am now on duloxetine and amitriptyline. I absolutely know when if I've forgotten to take them. Tried naproxen and celecoxib but they did nothing so stopped taking them. Along with the steroid injections, pain is noticeably less (apart from the coccyx) and hope it lasts.
For what it's worth, SI joint dysfunction is often not seen on xrays or scans.
A tens machine helps me a lot, there are tunes when I have it on most of the day. And a massage gun.
Good luck and I hope you get some relief soon.
Xx