Fed up with medical things

Sjogren's and R.A are not the same disease.

Sjögren's syndrome and rheumatoid arthritis are not the same, but they are related autoimmune diseases. Sjögren's syndrome is primarily characterized by dry eyes and mouth, while rheumatoid arthritis primarily causes joint inflammation and pain. Sjögren's can also occur alongside rheumatoid arthritis, known as secondary Sjögren's, and both conditions share a common autoimmune nature.

I have both, R.A and secondary Sjogren's, but for many years blood tests showed I was sero negative. However, an R.A diagnosis is not made solely on bloods alone, an R.A consultant will look at other factors.

I am in a similar position to you, Gentleshores. I have been waiting for eighteen months for a referral back to the cystic fibrosis consultant for my deteriorating COPD, as requested by my cardiologist. Getting nowhere.

For the last three months, my GP has palmed me off with medications, which do not work for mouth problems, related to my biologics medication. My dentist took one look the other day and referred me to an oral surgeon for an investigation into suspicious mouth ulcers.

The Health Service is broken, I too am fed up with medical problems and conditions and extreme pain, which I have no control over, however, I will not let them break me.
I am my own advocate and will keep pestering clinicians, until I get the support I need.

Surely there is a reason why your GP won't refer you. Have you asked?

Many on GN are suffering in a similar way and my heart goes out to them.

Can you see another GP, or change surgery? Ask to be referred to MSK clinic, they should refer you for MRI scan, or cortisone injections at least.
I am 60- need both knees doing due to an injury in work many years ago.
20 injections later, now having my knee replaced. You need to keep on at your GP. Good luck

Thank you all and I am sorry there are so many other ladies having similar issues.

It might be possible to change GP surgery but there is only one other in my area - we're rural. Which is very small and tends to run on locums. I suppose I'm worried it might be no better. At least with the bigger practice I am with there are a few different Dr's to choose from. But unless they can write you a prescription for something or unless it's an urgent "medical" problem (which I think it is and they don't) then they don't seem to be able to do much. Even after my left knee locked and I had paramedics out giving me gas and air, (they told me to ring the GP next day and get an xray), the duty GP just sympathised and said self refer to physio..........

I was indeed supposed to be being referred to the MSK clinic and the GP I've been dealing with said she would refer me. When the referral came through it was just for physio! I said - I thought you were referring me to the MSK clinic and she said I already told you I can't do that, I can only refer you to physio. Which was not true! So obviously that is demoralising as it affects trust.

All I've been told is they're not allowed to refer directly to a Consultant if its musculoskeletal. Frankly I think it's criminal. Either that or GP's have been extremely undermined in their powers by someone from above. But it maybe depends on local health authorities?

I did pay to go and see a private consultant last year and that was a bad experience too. He also just said physio. I think there is a blanket rule that they won't do arthroscopy on anyone over a certain age.

Which is why I'm now pushing for the stem cell injections - if it's not too late.

I had another post about that on here when it happened as I didn't even get chance to talk properly or ask about my MRI or stem cell treatment or knee replacements. I think he was about to go on holiday and in a rush. Not the right person anyway. Usually with private appointments they are nice!

Hence I'm back with the NHS route for now because there's only one NHS hospital that does the stem cell treatments.

I’m in the the same group as marydoll. RA psoriatic arthritis, osteo arthritis, osteo pins, sjogrons syndrome, Reynards, mild copd and permanent atrial fib
I was 25 years managing the inflammatory arthritis and auto immune conditions - negative blood tests throughout and only when inflammatory eye disease struck did my new GP put it all together and refer me to a rheumatology professor
It’s always a surprise how difficult it is to get Auto immune conditions diagnosed and treated

Some GPs are just hopeless- I am lucky my Gp does those injections. If you are having any, keep track of how many-unfortunately I have had too many, my bones are now damaged.
My specialist said I haven’t to have any more.
Also I don’t recommend having any cartilage removed if it can be helped as now I have bone on bone, osteoarthritis ( which I didn’t have before.
We also had a locum Gp covering temporarily, they knocked me off my pain meds & other meds 😩 Shot up to the surgery, was promptly put back on them.
Stick to your guns Gentleshores!

Mt61

Some GPs are just hopeless- I am lucky my Gp does those injections. If you are having any, keep track of how many-unfortunately I have had too many, my bones are now damaged.
My specialist said I haven’t to have any more.
Also I don’t recommend having any cartilage removed if it can be helped as now I have bone on bone, osteoarthritis ( which I didn’t have before.
We also had a locum Gp covering temporarily, they knocked me off my pain meds & other meds 😩 Shot up to the surgery, was promptly put back on them.
Stick to your guns Gentleshores!

This is why they keep saying they won't do surgery for the cartilage, because it can worsen arthritis (if you have any). But neither will they do knee replacements.

Iam64 - really sorry to hear you have all that. I had a fibromyalgia diagnosis many years ago - in my upper limbs. It is also something I managed very well for a couple of decades without issue - posture and ergonomics etc. It only affected my upper limbs after repetitive strain injury. I actually think it is just repetitive strain injury. But I suspect if anyone sees "fibromyalgia" on my diagnosis, they think it affects everywhere. I didn't have any knee problems at all though! That was an injury after a fall that tore the cartilage, and I managed quite well for a couple of years and kept active (had to as the pandemic was on). I just had a major setback when it tore again but it's like talking to a brick wall.

To me it was urgent to get mobile, so I could properly manage my upper limb posture etc. But they don't join the dots there. I kept explaining that but they only look at the knees in isolation. Doing physio isn't the same as walking! I just want to walk and so I want new knees! Or something to repair the cartilage.

I held off getting this small powerchair for downstairs for a long time as didn't want to get dependent on it but hadn't been able to get as far as the kitchen for 6 months and it got to the point where I just wanted to get around the house and do my "pottering" in different rooms and feel part of normal life.

Anyway can't even "potter" now or stand. I think it's 6 weeks for a stress fracture to heal.

I'm contemplating paying for a private MRI scan of my foot just to see if it is a stress fracture or not, so I know if I can still stand on it a little bit ........it doesn't show up on x ray for a few weeks and NHS aren't going to give me an MRI scan. Because I need to be on my feet again (even if I can't walk more than 6 feet!)

We did that for our son with his spinal injury when the physio said he’d just strained it. It turned out he has a prolapsed disc and we got an appointment to the specialist by the physio.

I am so sorry you are having to go through this. Just keep going, write to MP, but lets hope they can do something. I would write to Keir Starmer, this is really not acceptabole

What do they want these GPs for it become bone on bone, the pain is unbelievable. You need this op now not when your life is coming to an end.
My dear M & D offered to pay for mine but the specialist said it wasn’t about the money but that I was too young at 52 😩 anyway getting them done soon 😊

Anyway can't even "potter" now or stand. I think it's 6 weeks for a stress fracture to heal.

I'm presuming the fracture I have is a stress fracture and I understand it will take 6-8 weeks to heal. I did have an X-ray.
Mind you, trying to get information from the surgery on what to do, whether or not to weight-bear, is quite difficult.

I have had umpteen foot stress fractures. Sometimes I gave been unaware of them, until a scan for something else. I can tolerate high levels ofvpain andcassumed the pain was due to my R.A.
I now have a condition called Freibergs disease, due to them.

Allira

^Anyway can't even "potter" now or stand. I think it's 6 weeks for a stress fracture to heal.^

I'm presuming the fracture I have is a stress fracture and I understand it will take 6-8 weeks to heal. I did have an X-ray.
Mind you, trying to get information from the surgery on what to do, whether or not to weight-bear, is quite difficult.

Exactly. "We don't know if it's a stress fracture for a few weeks until it shows up on x-ray." So what are you supposed to do for those few weeks?! I took to google. Some places say stay off it or you can make it worse. Others say it's ok to walk in a moonboot while it's healing. Which I would do, except I can't because I have to wear a moonboot on my other foot! And it wouldn't be safe to walk in two moonboots - would affect balance and could cause a fall. I am seriously thinking of paying for a private MRI scan to know definitively if it's a stress fracture or not. I did look that up but the next date available was over a month .........by which time I could have a second x ray. I actually forgot a couple of times and got out of bed to go to the loo out of habit. That has showed it is still too painful to walk on and it got worse again. I thought about maybe trying a medical shoe rather than a moonboot.

Marydoll

I have had umpteen foot stress fractures. Sometimes I gave been unaware of them, until a scan for something else. I can tolerate high levels ofvpain andcassumed the pain was due to my R.A.
I now have a condition called Freibergs disease, due to them.

I'm really sorry you have this

I couldn't put a moon boot on mine 😃

Actually, five weeks on, I did some gardening today, with a chair handy to hang on to or sit on.

gentleshores

Marydoll

I have had umpteen foot stress fractures. Sometimes I gave been unaware of them, until a scan for something else. I can tolerate high levels ofvpain andcassumed the pain was due to my R.A.
I now have a condition called Freibergs disease, due to them.

I'm really sorry you have this

Thanks, but I'm used to them! My only beef is that I can no longer wear heels (I am very vain) and find orthotics so uncomfortable.

I once returned to school after an RA appointment and being told I had two semi healed stress fractures and had broken one of them again. My colleagues were horrified that I had been walking limping about for months and hadn't realised.
Sometimes, I can actually feel the snap, accompanied by an excruciating pain. After a few days, the pain lessens and I barely notice it.

Sorry for all the typos, I'm very weary today!
I hope your situation can improve Gentleshores, sometimes it feels as if we have been written off!

My orthotics are quite comfortable, Marydoll, made (well, customised) by the orthotics section of the podiatry department.
I do wear rather boring shoes, trainers and boots and Mary Janes in the summer. Occasionally sandals if it's very hot.

Apologies for going off at a tangent but I was very exited the other night to find that they are now making Mary Jane style Crocs. Which means ( given that I live in Crocs, trainers and Ugg boots) I will be able to wear a dress occasionally!

Dress? What are they? 😃

Allira

My orthotics are quite comfortable, Marydoll, made (well, customised) by the orthotics section of the podiatry department.
I do wear rather boring shoes, trainers and boots and Mary Janes in the summer. Occasionally sandals if it's very hot.

I have various custom made orthotics over the years, unfortunately they have never really helped.

What does help, are ankle support stockings. The only problem is, I have to rely on DH to get them off again and he is not exactly gentle!

😯
Come on Rab, you can do better!!

Well, the orthotics aren't brilliant but I think they do help, but I do sometimes wonder if my knees and hips got used to being in a certain position for years without orthotics.