FRUSTRATION....

[Dedikodu]

I came back from a holiday in Istanbul with terrible neck pain, and my rotar cuff tear was acting up. I was breathless on inclines and fatigued, but I thought it was the hard mattress or lack of soft pillows in our Arbb.. Had a face-to-face with a Locum who took a blood test and suggested it was polymalgia.

When the blood test results came in, my own sugery DR said it was Anemia but not the iron-deficient type, and very high Inflammation markers and she put me on Prednisolone to see if polymalgia.... She also asked for a chest X-ray. The outcome X-ray was clear (only found out later), and she took me off Pred it didn't have ( the expected magic quick effect indicator ) . She then left the Surgery.

In the time a couple of months between doctors I had two falls not linked to the to the neck pain, one facturing my humerus and one splitting my head.

I was given another Locum who did more blood tests as the fatigue and breathlessness was still there but the neck pain had eased, but on rising in the morning was getting difficult once going ok and the inflammatory markers rising and other markers not good... The Locum was through ordering more comprehensive blood tests ... On their return, he put me on the 2-week to be seen. Cancer thinking was possibly myeloma I had a 9-day anxious wait to be told negative with low risk MGUS ...

Then, I went through a strange stage with my surgery. The locum had asked in his notes that my blood test be explained to me by a Clinician, but I was contacted by a nurse to relay non non-cancer result and was told there would be no need for further investigation or appointments ..

My husband was angry as nothing had changed in my condition, pain etc, and the Anemia, and he demanded a face-to-face meeting with a clinician as we had questions about the treatment for the Anemia. The Nurse said the surgery doesn't treat people with an anemia marker of 10 but only when at 8, so eat well with foods that have plenty of Iron.

It was then my husband knew she hadn't a clue on the Drs notes the Anemia being not the Iron defficent type it was actually high in Iron... So said if a face to face appointment was our right and if not then we would contact the NHS Ondbudsman ... She said she would phone me later.

She did it with two different days and DRs but not the locum dealing with me.

We accepted one and went to the appointment, where the Doctor said it definitely needed further investigation as she thinks it is RA... looking at the blood tests and now because my hip was also now painful, as was one hand numb with pins and needles..

She ordered another blood test and a hip x-ray. When the blood tests arrived, the inflammation marker was again rising, and she said she would now want an urgent CT scan and, when the results come in, an appointment to see a rheumatologist.

But two weeks from that appointment, I now have pain all over, with pain in my coccyx and both buttocks. Both hands are nearly useless, with no strength and mobility further restricted. The Pain on rising is excruciating. I nearly end in tears, and I find it hard to take the first steps. Once going, it's not too bad with co-codmal, which I am now taking six times throughout the day... some days worse than others ..

But again, the Surgery is a problem. I wanted to tell my Dr about the deterioration and to ask her if there is anything I could take to dampen the inflammation. As I am concerned, it doesn't do any irreparable damage before I get the RA diagnosis or that it doesn't damage any vital organ in the wait to see a rheumatologist .

Phone calls to the Sugery are pointless so I went to thier website, but it was down. They gave an e-mail address so I contacted it and e-mailed her my concerns, only for it to be returned, saying from the 4th March they will be unread but gave three alternative websites that take patients' concerns, two of which were useless as they only repeat prescriptions etc .. The third was for e-consult, but it had to be condensed into 100 words, so I gave a Summary

Reciving the below

Thanks for your message, and I'm sorry to hear about your symptoms. I agree that from your symptoms and blood test results, you need a Rheumatology review. From the notes it sounds like this is being organised. The difficult thing is that rheumatologists sometimes need to see you when things are bad so they can make the right diagnosis and recommend the right treatment. However, I agree it is difficult to wait for weeks when you are in severe pain. I think it is unlikely that permanent damage will result. However it is difficult with just the information in your notes/from this e-consult, without having examined you, to advise fully. I suggest you contact the surgery to request a further face-to-face review with your GP, who should be able to re-assess and then decide if further advice or treatment is needed whilst you are waiting. Please contact Sidley and tell them that you were advised to seek a face-to-face appointment in this e-consult - unfortunately, I'm not able to book directly on your behalf. With kind regards Dr J Barrow

So, back to square one after two days, the 8 am scramble for an appointment, only to be told you can't have a face to face with the actual Dr. dealing with you ...

Hard to believe only several months ago I was a healthy and active 10,000 steps a day person now breathless and in pain .

Adjusted Calcium 2.67 mmol/L +0.08 increase out of range

Haematocrit 0.31 -0.051 decrease out of range

Haemoglobin 93 g/L -20 decrease out of range

MCH 24.6 pg -3.5 decrease out of range

Monocytes 0.91 10*9/L -0.16 decrease out of rang

Platelet Count 559 10*9/L +21 increase out of range

RDW 15.7% +1.1 increas out of range

Red Cell Count 3.78 10*12/L -0.24 decrease out of range

Serum 25-OH Vitamin D (D2 +D3) 133 nmol/L 20 decrease

Serum Creatinine 44 umol/L -7 decrease out of range

White Cell Count 11.68 10*9/L -4.29 decrease out of range

ESR mm/h -13 decrease out of range

Serum CRP 81 mg/L +30 increase out of range

Serum ferritin 463 ug/L +22 increase out of range

[Spanelmad]

Try contacting the practice manager and highlight the issues with dealing with your case that looks urgent to me! I would be pushing to see a heamatologist as well as the rheumatologist .

[sylvi]

I would certainly contain your practice manager as the treatment you have had is disgusting. xxx

[Maisie1958]

I’m so sorry to hear this. No advice but it does still sound as if could be PMR-ish. Perhaps have a look at Health unlocked PMRGCAuk forum and post there? Would a private consultation with a rheumatologist be possible to speed things along? Not fair but sometimes you have to do what you have to do. I would definitely contact your practice manager though first, they can’t just wash their hands of responsibilities - if they suspected RA then they should urgently request a rheumatologist appointment. I do hope you get help soon. All good wishes.

[medway-lady]

Did anyone check for a blood clot after a flight? I don’t know anything about your blood test results and here Econsult is run by the surgery as it was taken back from the agents. So our GPs do see the consults and triage patients accordingly. I’m sorry your having issues but suggest you might just have to join the 8 am dash and try to get some pain relief from the GP and alway remember bloods are a guide and if the GP saw anything worrying you’d get recalled. I’ve had a blood test a week now for 6 weeks. They usually are on top of them here and I’d have thought the same in most places.

[Rubygirl08]

I agree with the other posts, contact the practice manager - that's what they get paid for.I'm so sorry you're in so much pain and can't get a straight answer from your gp. I hope you get seen soon, take your husband in with you and it might be an idea to write some notes for you to bring up with them instead of getting sidetracked with what they think you are there for.

Best wishes x

[wilbertjellyfish]

Hoping you get help soon. I suspect your going to have to make a nuisance of yourself to get anywhere

[virtualreality]

I am so sorry to hear that you've been left in such pain without satisfactory follow up for some months now. Sadly, this is all too common.

As RA is suspected by the last GP you saw, according to NICE guidelines you need to be referred to rheumatology for specialist opinion: nice.org.uk/guidance/ng100/...

In all of the tests you've had, it doesn't sound as though rheumatoid factor or anti-CCP have been tested, which can be indicators of RA (though are not diagnostic and are not always high). It may be that those tests need to be run in primary care, but that shouldn't delay a referral being made. Clearly, your inflammation markers have been consistently high for some time now. It sounds like anaemia of chronic disease has been identified too.

If any of the following criteria apply to you, then the NICE guidelines state that the referral to rheumatology should be via the urgent pathway:

- the small joints of the hands or feet are affected

- more than one joint is affected

- there has been a delay of 3 months or longer between onset of symptoms and seeking medical advice.

Sometimes it helps to know what the guidance says in order to make specific requests of the GP you see. I had a somewhat similar experience to you prior to diagnosis, (including seeing a different GP every time). By the time I saw the doctor who referred me to rheumatology I'd found this information and knew a referral was needed - I'd have asked myself if she hadn't done it at that point. It sounds like a referral may be in progress for you, but it may help to establish whether it was made via the urgent pathway, and if not, ask for it to be expedited in view of further deteriorating symptoms.

If there will be any delay in further investigations, it seems unreasonable to leave you in so much pain during the wait. That is a complication for specialist diagnosis, but it sounds like you have been dealing with a high level of pain for months now. Hopefully the GP you next see will conduct a thorough examination and document your symptoms for the purposes of onward referral, which would create a record of how things are for you now, and that stronger pain relief and/or anti-inflammatories can be prescribed. It may also be helpful to keep a diary of your symptoms and photograph any areas of swelling so that you have a detailed record too - this can be invaluable for diagnostic appointments.

I really hope there is swift progress following your next GP appointment, and agree with others that it may be worth contacting the practice manager if you have any difficulty obtaining one. Wishing you all the best.

[Numptybrain]

I’m sorry I would go to A & E if they can’t control your pain it’s unfair you suffering like this. You deserve better and quicker treatment. Your GP surgery needs reporting, I would try and find a better one. I really wish you well and really hope you get this resolved asap before any damage is done!

Take care

Wendy xx

[Croft9232]

So sorry to hear of your aches and pains.

I too have a Rotator Cuff tear and understand your pain when it acts up. Your symptoms seem very like PMR… worsening stiffness and pain, and other parts of your body joining in. Plus, the getting up from your bed in the mornings. Do you have trouble turning over too?

Please think about coming over to PMRGCA uk site. You may need to be on Prednisolone longer than you tried. Not everyone responds immediately, it may take longer.

Take Care,

[MissMinto]

Meanwhile I would be very tempted to put those blood test results into ChatGPT and see if it comes up with anything helpful

[Rusticgarden]

Damage to joints happens over months / years ,organ damage is normally due to drugs for RA . To be honest you certainly have had numerous tests didnt GP do a RF factor test when you told him your symptoms? Once referred to Rheumatoid, GPs don't like to get involved until Consultants start treatment

[trevorlloyd1351]

See " virtual reality" in this post.

Ask for bloods on Rheumatoid Factor, Anti- ccp antibody test. These indicate if you are likely to have RA. Should be possible virtually immediately with any doctor with results in two days, after bloods taken. Results should be on the NHS app, if not ask Dr. where they are. Does not get rid of any pain , but its a step forward.