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 struggled with joint and muscle pain towards the end of my 40s. I assumed it was peri menopause and started HRT. It stopped the mood swings and hot flushes but did nothing for pain.

I have been taking meds to prevent damage from high blood pressure since my DS was born, pregnancy induced hypertension. The side effects include chronic acid reflux so have been on antacids for a similar timespan.

I then came across studies that showed the antacid meds interfered with magnesium absorption in the gut leading to deficiency. The symptoms of magnesium deficiency matched my chronic pain symptoms. After six months of supplements the improvement was significant.

In addition, I take antihistamines, B12 and Vit D. I’m not on them full time, when the symptoms subside I stop, then start again when they start to return.

I now take hormone blockers for breast cancer. The side effects of no/low estrogen are different from those I experienced during peri menopause. The joint pain affects different joints but is always bilateral. So if it’s in my elbows it’s both elbows. It does flit around but fortunately doesn’t appear to affect every joint at the same time.

Magnesium is essential for muscle function, low B12 is common in older women and Vit D deficiency is often the result of using sun creams all the time. The pattern that has emerged is that the symptoms progressively worsen during Winter months. I’m about to start taking supplements for a couple of months before the summer.

OP see if you can get a more understanding and proactive GP before going private, unless that's what you want to do and can can afford it.

I agree with this if you can afford it. It took me 2 private ones to get a diagnosis and I used to work in rheumatology. I’m on the NHS now and about to start my second biologic.

It does sound like PsA, however it's not your job to find the diagnosis and present at the GP with it. Go to the GP with the symptoms, all laid out, tell her it's so much worse in the morning, that you feel it's escalating, you are exhausted and struggling and need help. If the skin and joints appear to get worse together, then tell her that. You should b able to see a rheumatologist anyway for Fibromyalgia getting so much worse.

Don't faff around with alternative remedies and diets, go back to the GP every time it gets worse or a treatment doesn't work, maybe see a different GP at the practice if you are not listened to. Consider minor ailments for anything swelling up, to rule out injuries and a fresh pair of eyes. I received a RA diagnosis very quickly as I went to minor ailments with very swollen knees and the junior doctor called a rheumatologist down, and bam I was in the system (but also very ill very quickly, so it wasn't that great).

Whilst I agree it isn’t your job to find the diagnosis and present it to the GP there are times when it helps and is unfortunately necessary. My previous GP wouldn’t even refer me to rheumatology despite me asking several times, just kept saying I didn’t fit the NHS criteria for referral.

I went to the minor injuries unit when my big toe joint swelled up so badly I couldn’t have a sheet covering it as was so painful. The nurse said I shouldn’t have gone as it wasn’t an injury and was really grumpy about it though did concede it felt hot and told me to take Ibuprofen.

Thankfully the area I have moved to are so much better for healthcare and my rheumatology department very good and proactive but I now have joint damage in my toes where the inflammation was left unchecked and the top of my hip had a 3rd of it destroyed when I had to have my hip replaced . Although you shouldn’t have to you do sometimes have to lay things out and fight to get the right treatment.

GPs are often not very clued up on PsA and Bath who are one of the leading places in the country in PsA are trying to get work on GP education I believe. The thinking is with it that it needs treatment fast once it is active so referrals need to happen once it gets going . Not all rheumatologists are good with it either unfortunately and I have heard of people being diagnosed with it one area, moving to another and the new rheumatologist saying they don’t have it.

Just came across your thread and the combination of joint pain and rash makes me wonder if anyone has thought about sarcoidosis (I bet they haven't). Before you get into expensive tests, a chest xray might be appropriate as 90% of sarcoidosis patients have lung inflammation. A blood test for ACE levels might be telling too. Whatever it is, I'm sorry you're not being listened to.

Update - GP surgery called today I am HLA-B27 positive and am getting a rheumatology referral. Probably a long wait. Pain is getting worse lower back and hips especially.

How are you feeling about the positive test result? I feel you have received a poor standard of care, both from the rheumatologist who initially diagnosed you with fibromyalgia and from your GP. You may want to make a complaint (Citizens Advice Bureau can be helpful with this).

I would personally want to go back to the GP and ask what the plan is to manage your pain symptoms while you wait for a rheumatologist referral. You may find you get a different response in the light of the positive blood test.

if there is any way of getting a private rheumatology appointment I’d try this. I’m sorry you’ve been let down and your pain has been dismissed for so long and I hope things gets better 💕

I’ve just seen your thread @sweetkitty

This from your first post

“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”

combined with your brother’s AS & +HLA-B27, (and now yours) immediately made me think AS too.

I also have AS, and the morning stiffness is the key issue for me too.
I’m glad you’ve got a rheumatology referral. I just hope it isn’t too long a wait.

@KolaBearthanks I’ve been on the NASS website and I’ve got every symptom apart from one I think. I’m quite upset about it as it’s taken my brother rheumatologist suggesting I get tested for my GP to take notice and actually do the test, now it’s positive I’m getting a referral. Based only on my stmt and the HLA-B27 result it’s all pointing to AS isn’t it?

Every night I’m walking at 3-4am in agony, crying in pain as I literally cannot move in bed. Very sore and stiff in the morning but better once I’m up and moving. Pain in lower back, SI joints and knees.

IF I do get a diagnosis I feel so let down all those years, all those different anti depressants/painkillers/gabapentin/etc with horrible side effects telling the GP I’m in so much pain and feeling like she doesn’t believe me.

@sweetkitty NASS is a great source of info. IMHO it’s worth paying to join as you get access to extra stuff too, which has been super helpful, eg webinars on a whole range of topics.
Personally (on advice from one such webinar actually!) I’ve also found regular exercise has benefitted me hugely.
But I know what you mean - I think a lot of AS sufferers experience a significant number of years in pain before they get a formal diagnosis. They think I may have had it for 10-15 years… but was just fobbed off with ‘back pain.’
I ended up using my work private medical cover to see a rheumatologist for the relevant tests and diagnosis and then used that to get referred to a nhs rheumatology unit. GPs just don’t understand the issues, I don’t think.
Good luck.

I thought for a long time that I had developed RA. I felt like I had been hit by a train all the time. Joint pain, brain fog, muscle stiffness and all my previous injuries and surgical sites as well as my vaccination sites were honking night and day. I was hot all the time. Everything was inflamed.

I went on an elimination diet and over about 4 months I realised that I was sensitive to seed oils - Shea,palm,sunflower, cottonseed - pretty much all of it and it's in a lot of foods.

If I have no food with oil in it or cooked in oil, I am pain and symptom free.

I may have missed it OP but when your tests results come back “perfect” are you getting your actual results with lab ranges?
Particularly when it comes to thyroid results it’s important to know the numbers.
If your GP is unsympathetic or disrespectful can you see someone else?