So I finally had a letter from Rheumatology saying if I hadn’t heard from them today to call. I just did that and I’m now in tears. They told me they’d sent a letter to my doctor on 23rd August giving them advice on my treatment. I rang my gp they said the only letter they’d had was to say my referral had been rejected. I’m in tears...I’m fed up of the pain in my feet, it’s like walking on stones and sometimes even glass. I go for a walk to get exercise as they advise and after 20 minutes my toes and the balls of my feet hurt so bad. I told the receptionist and she’s made me a triage telephone appointment for this afternoon. I don’t like taking pain killers all the time but now I have to to cope. The pain is still there but they make me sleep so that’s better than nothing. Sorry...I’m distraught..just needed to vent a little.
Had a reply to my referral...in tears: So I finally had... - NRAS
Had a reply to my referral...in tears
You vent all you like if it helps you darling.. We are all in this together.xxx
Thanks Ajay. I think I will call and ask for copies, I didn’t know I could do that. I just cannot believe this has happened. I’ve tried to stay positive in the knowledge the hospital would help me. Now, that positivity has just been killed, for the moment. It’s no wonder we get depression too, the pain is enough to cause that, without the experts refusing to see you.
They can email them to you . Think I would insist on this
I am so saddened to hear this and am at a loss as to what to say. I understand for some people services are either getting back to some normality and that they have a good rapport with their health care providers and that it so good to hear, but for others it is a living hell and trying to access anything or get a response from departments or a less than satisfactory response is simply dreadful and is now having the potential for people to suffer long term damage or worse with their health. I know that isn't helpful to hear but please keep strong and determined. I am well aware of the letters sent from rhumys and in my experience the inaccuracies they have contained, even including name changes partway through the letter! Please vent away as it is so frustrating and when you are in constant pain and suffering it is no joke. Take care x
This sounds more like Mortons and it's an Orthopaedic Surgeon or Podiatrist as RA drugs won't help. Sorry we can't give medical advice but sounds like my problem solved by surgery. It's often a sign of RA but doesn't always develop. Do not stop walking just wear a shoe with a firm sole and small heel. You can have an injection into the Neuroma if it is one and it works for a few months. You might be able to find a private podiatrist to do one. The diagnosis is by ultra sound and so is the injection it's painless. Insoles never worked for me and surgeon said they rarely do, only surgery really works. It is like walking on broken glass, rolling the foot over a bottle of ice helps relieve it but yes so very painful.
PS Stopping walking is wrong, a MN a is a small benign tumour between the toe joints on a nerve ending but if you stop walking, recovery will take longer. Pain relief is difficult I had Zapain for a few weeks but it hurt so much I went private and problem solved in a couple of weeks.
The only shoes I wear are sketchers as they are soft and have a spongy insole. Hard insoles just hurt more. My RA count was very high I’m told by 3 doctors. But after reading up on Morton’s Neuroma I see your point. I rang asking for copies of the letter(s) and they said they were in the process of making me an appointment to see a Rheumatologist but asked my gp for some more information they needed. They say all my gp did was to resend a copy of their original referral letter so the rheumatologist cancelled my referral! I’ll find out more about this when I talk to my gp this afternoon. I’m really not happy. I just want to be in less pain. When I wake in the morning putting my feet on the floor to get out of bed is horrendous. I’ve always been very active and now I just cannot do anything where I’m on my feet for more than 20 minutes. I get tired very quickly too. It’s just not like me.
I know but Sketchers are really really bad for feet. Ask your GP and they don't have enough support for the soles of your feet. My left foot was agony and eventually twisted and had to be operated on to straighten. I'd suggest that you try to get to a good old fashioned show shop and perhaps even use a half sole insert in firm soled shoes. It's probably not what you want to hear but your Sketchers have no shock absorbency they just squish down which is not good and wooden floors are awful too, Anything is worth trying to get some relief so maybe a trip to Boots for insoles don't get full length as you need the drop down to raise heel as its the pressure on the Neuroma which causes the pain. Try to work out when the pain occurs is it foot down or bend when taking up. Either way after the Surgeon advised me I threw the Sketchers away great for RA feet but not if you've got a Neuroma and it has to be treated properly. RA is complex but this does sound like my foot and I used to walk over the marsh as pavements were dreadful. I've cried on the side of the road with pain so really do understand and why in the end I went to see a private surgeon. But these days the waiting lists are so long and so do ask about better pain relief or can your GP do an examination. He can definitely hear and feel a click which diagnoses MN's so ask for an examination. It'll put your mind at rest if it is, and give you more information to not just go to the RA clinic but ask to see a podiatrist too.
The pain is foot down mostly but even when I have my feet up resting them. One doc told me not to wear high heals, which I don’t anyway, and not tight fitting. (If I put socks on the pain is worse.) I had sketchers on and he said they were the best. It seems you see one gp and they say one thing then another says different. It’s so confusing isn’t it.
I did try some metatarsal pads but they made the pain worse too.
I too find pavements and hard surfaces the worst, I walk on grass if there is some next to a path.
Yup its down to their opinion really and it depends on how big the MN is, if it is a big one or even two then metatarsal pads put more pressure on the NM not less, as its forcing it onto the joint. Defiantly ask the GP to look at your foot and check for the NM click. A good GP will know what to look for, best of luck as your suffering and it could be a waste of time just waiting for RA meds as they don't stop a MN from hurting. Pain is debilitating anyway without the stress of constant pain.
Thanks Medway. I’ll certainly mention it this afternoon. X
Are you sure it’s MN?. I thought I had it but turned out to be rheumatoid nodules. I have a few in the balls of my feet but although I know they there, only one really causes a problem. I have slightly flat feet too and wear 3/4 orthotics. Am most comfortable in soft, shock absorbing soles. I can’t stand on a hard surface. It’s just too uncomfortable. They tend to flare up sometimes worse than others. Surgeons are reluctant to operate due to risk of infection and difficulty to heal. Sorry to throw a potential spanner in the works. I’d personally do whatever causes me the least amount of pain and get a proper diagnosis.
I thought I had Morton’s Neuroma after 6 years of feeling as though I was constantly walking on pebbles. My GP agreed with me and sent me to an orthopaedic surgeon who arranged an MRI. This showed, not Morton’s neuroma but damage to the joints in my feet and synovitis. The surgeon said “you don’t need a surgeon, you need to see a rheumatologist. “ I was then diagnosed with PsA (no psoriasis).
Clemmie
Why did you wait 6 years to see the GP and then a surgeon as if it had been a MN its treatable and the RA might have found sooner. Moreover a MN has a click that a GP can feel so did he misdiagnose, or as a MN can be a symptom of RA did he not get you the correct treatment faster.
I went back and forth seeing my GP over the 6 years and each time was told “oh it’s probably a bit of arthritis” and he would never refer me. It wasn’t until my husband was working abroad that anyone took me seriously and my then GP immediately sent me to see the surgeon, literally the same day.
You've been treated really badly then, as my foot hurt and I was referred to a Podiatrist, he made it much worse 4 pairs of insoles later and in agony I went back to GP he pulled my toes and said its 14 month waiting list for a surgeon so I went private. He pulled toes and said as your insured we'll do an MRI , but you've a MN click, and later that day he made the appointment for surgery. Five days later a small scar and blue boot for a week, and painfree. He said it might return and it did but this time they got it early and injected then it again it came back and was removed.
After reading this I have decided I’m going to insist I have an MRI scan on my feet when my gp rings me back. At least then I’ll know certain things could possibly be ruled out or confirmed by an MRI. They actually have an ultrasound clinic at my gp’s too so I’ll ask of that may show anything up. I just want to know what it is and how they can help with whatever it is.
I have Morton’s in both feet the hole is approx 10mm in each now and toes have moved . I had cortisone treatment in each from January but was referred to see orthopaedic surgeon as following the scan it showed that not only the Morton’s , but I’d ripped the tendon from the ankle and the sinus had filled up and was full of inflammation . Bone spur on the top of foot . Obviously we then went into lockdown and everything stopped . My feet are now worse than ever and I have damaged the ligaments on the inside feels like an electric burn when I stand up or initially walk . I mentioned pain in my feet as a starting point 30 years ago and was completely ignored I now know it’s going to be surgical options but when who knows . I total agree though you must keep walking . . Hope you get seen sooner rather than later i must say I paid to see a podiatrist as I didn’t fit the criteria so glad I did as that allowed me to force the rheumatologist hand and get to see the orthopaedic podiatrists . Good luck 🌼
I was lucky as my feet are great now because nearly 2 years ago I had my foot straightened. All toes broken and a plate put in to keep foot straight. It still looks and feels normal and bone was shaved off inside of big toe. A great job and I'm still very happy to be able to walk normally again. It did'nt hurt after the operation at all, just a bit off balance as had 6 weeks in plaster. But so worth it. xx
That’s good news I’m writing this with my arm on cast as just had a trapezectomy on my dominant hand then have the joys of finger release and then same on left with the feet to be done as well o shall be rebuilt . Can’t wait agree with you though the pain in hand is less now than the left one you forget how much pain you live with . 🤗💕
Exactly so and soon that arm will be able to chuck a plate in temper perhaps? lol. Six million dollar lady ?? I think that these operations are going to become less available due to the crisis but doctors sometimes forget that pain is debilitating and that has an ongoing affect on daily life. Getting my foot done was great, no more pain, scarring is minimal and mostly down the inside. I can wear any shoes I like and they fit properly. I wonder if its an issue with finances as its expensive to have an operation but in the long term it must be cheaper that all the pain relief, doctors appointments and insoles they ue to put off doing something permeant that works and improves our lives. My insurance paid for mine but I know it was in the region of £8K that would be cheaper for the NHS surely as they could do like cataracts here one at a time in bulk. And the knock on is that those people would be happier, and able to contribute more to society.
If I could have had this operation 3years ago I would have been a game changer in my life . Still I’m loving child minding it’s an incredible experience to look after my grandchildren blessed am I 🌼
Our grandaughter is 9 months old and so cute. Crawling and a coffee table thief to boot. If anything is left on the table she can get. I'd forgotten how quick babies can be. lol
That's exactly what I was thinking (mortons). My mum had it and she explained that it was like walking on broken glass but she had surgery and it was brilliant for her. Good luck x
Thank you Debbie. I’ve got my first Rheumatology appointment on Monday morning. Still have feet problem but now I also have pain in my sternum and ribs. Ive had an ecg and a 24 hour heart monitor and it’s not my heart which was a massive relief! I’ve read it could be Costochondritis which can be associated with RA too so something else to ask about on Monday. I’ll report back on Monday as to what happens at my appointment if anything. I just want to feel like ‘me’ again it’s all really getting to me now so bad that I’m also having anxiety attacks.
Sorry to hear that whaleroad and have clicked the like button because I agree with you and that must have been some news....it's concerning and if something is untrue and say for instance you don't get a copy of the letter how would you be aware it is on your medical records.
I’m so sad to hear this Haz and hope it is something that can be remedied soon. I do understand that RA drugs can’t be given unless certain it is RA but I hope you could be given another blood test to check in the months to come just to check. I had RA which didn’t show for almost a year. I know Many of us here have been relieved to have got the RA diagnosis in a way so we could get on with treating it, even though we didn’t want it of course, so being left in no man’s land or no woman’s land is awful. Hugs to you. I read with interest Medway’s thoughts. x
I’m sorry you have been treated like that. It really isn’t a humane way to do things!
I hope your phone call this afternoon is more successful. Perhaps write down your questions in advance so you can stay calm and not burst into tears. I would want to know
- what the exact blood test was that made them suspect RA (if it was one called the rheumatoid factor then being positive is not 100% guarantee that you have RA)?
- will they send you copies of the letters? (you have the right to ask for them, but they can charge for photocopying. If they get snippy tell them you’ll send a full data access request.
- what are the next steps now as you are still suffering from severe pain. Will they refer you for a second opinion to a foot specialist, or get x-rays of your feet?
I also wonder like Medway-lady whether this Metatarsalgia is from something else other than RA. Have you ever seen a podiatrist? Good luck
Now I’m more ‘advised’ from reading replies on here I’m starting to feel stronger to deal with the gp this afternoon. I think you are right that I should have xrays on my feet or at least have them looked at properly. My RA count was very high I was told. But like you say that does not mean it is RA. I just want, need, to know what I’m dealing with and get help instead of just popping pain killers that knock me out.
NO, No Xrays MN's are not seen on X-rays as soft tissue its either an Ultra sound , CT or MRI . See my previous reply please. The GP can hear and feel a MN.
I forgot to say that a toe on each foot is now swollen and moving towards the toe next to it. I have gaps between them that weren’t there before all this started.
That happened to me a walking with pain caused me to put pressure where the foot is not supposed to have pressure. I took a huge effort to try to walk normally even with pain you I only had one foot affected unlike you so be persistent and ask to see GP f2f for an examination. You've described it well here so repeat to GP and ours are doing more f2f now just has to be same day. I saw mine yesterday as had a Shingles flare up so needed antivirals. It was really reassuring, just they can't prescribe antivirals without seeing people despite the fact I could see the rash and it hurt. So sorted now. It seems some GP's might be using the current circumstances to seemingly change practices back to the 50's and 60's when it was sit and wait. But I expect a lot are fed up with time wasters and the UK is so short of doctors now.
I had a similar event and made a complaint as was able to refer to the doctor who confirmed nurses letter was fiction. So it was removed from my file and another written and it went on her record. It was because she'd tried to imply that I'd been difficult and not that she had called me in for an examination already done and would not listen when I said that the doctor had already approved this medication and its been past the panel. So I asked her to call the doctor in and he did and confirmed that all this has been done several weeks ago. All that was left out and so whilst I'm usually happy to let things go it wasn't going on my record that I'd been rude to her.
Good for you. x
Haz58
This is Hermes123 I know how you feel and how let down leads to depression, I had urgent pain relief appointments book and cancelled twice because of the virus, then the spine team
looking after me pulled out all the stops to get my very urgent injections into my spine as a result of an MRI scan. Had a consultation with a Consultant who agreed it was most urgent,
after a week had passed I phone the hospital this was four weeks after being passed round four different departments I got an answer machine sorry no booking available at present as I am on my Annual leave. Now I now she probably deserves that leave, but you cannot tell me the NHS have no one to carry on booking appointments, that has been a month now
and still not a word and I am going through hell with the pain in a number of areas. Hermes.
That is awful, surely one person taking annual leave can't be right in respect of the whole appointment/booking system grinding to a halt. I am so sorry to hear what you are going through and it seems urgent is becoming another meaningless word like the words 'lessons will be learned'. I really hope that you hear something soon and get the relief you so need and deserve from your pain. Take care
Pippy25
Hermes123 Thank you kindly, when I go to bed and lay down it feels like my spine has snapped in two, as well as the whole of my L/H. side real crazy pain I'm down for three injection in the base of my spine. Thank you, Hermes.
Hi Pippy25, I manage to fined out from our GPs. Practice secretary, that my emergency
appointment would be 8. weeks approx. from the receipt of the Consultants letter, she then went on to ask how many pages did I receive from the from the consultant! I said one, you should of received two, will forward you directly received next morning, but still no help, as it just said will be contacted in due course! when is due course a month
6. months a year I ask you what sort of reply is that. I am still in agony back before
Covic 19. started one group of spinal people pulled all the stops, to have all time wasted for a waiting list. I go to bed in agony its up to my shoulders and neck. Hermes best wishes to you Pippy.
It's awful as there are so many of us in this state of waiting for appointments and to be seen and as you rightly say what does 'due course' mean? There is such a backlog of people waiting for appointments, operations, services and while I completely understand about the virus, the backlog is leaving people in agony, on ever growing waiting lists and possibly presenting more health problems. Things feel like they are all over the place at the moment and I hope that you wont have to wait much longer and that you get the appointment and things will start to move forward for you. Take care.
Been in severe pain for eight months. Finally had new meds six weeks ago. First it was sick consultant then covid problem. Became quite desperate with knee pain. People on this site understand what that is like and reading comments has helped me feel more positive about things. Don’t take a brush off for an answer.
It's a horrible situation to be in pain for what is a significant length of time and sadly you are right people on this forum do understand and I feel it spurs me on to keep going. I hope that you get some answers soon and more importantly a way forward and relief from the pain you are in right now.
So sorry to know your pain. Just come in if you need to write anything.
So sorry to hear you've been going through this Haz. I hope all goes well for you this afternoon with your GP. All the best. x
Hi Haz,
I have complete sympathy for your situation. It s also the bain of my life too! As soon as I walk it s like walking on a pebble beach bare foot with the pebbles as big as golf balls. Literally I my movement now is slow especially on awakening takes me twice as long to get to the bathroom. Weird thing is when I went to have my scan 3 days ago, they only scanned my hands, I conveyed that the problem is also my feet it would be great to scan them too? But they stated that they assess the damage only by scanning the hands. I just cannot fathom it out. So I too am no further forward. Let me know how it goes? Take care x
I will Jaxine. I spoke to a gp today and he says he’s got to refer me back to the original gp that referred me to Rheumatology. It’s just crazy. They wouldnt give me an appointment to look at my feet either. I have to wait now for the original gp to contact me. It seems that my surgery did not send done requested info to the hospital so the hospital cancelled my referral. It’s all such a mess.
Hopefully we’ll both get there in the end, sooner rather than later. As far as the hand thing goes it just doesn’t make sense does it. Without comfort in your feet you can’t do anything.
I'm baffled! I hobbled in, couldn't wait for them to scan my feet but to no avail! Can t get a ftf appointment with a doctor yet either. Illl mention it to my consultant if and when she rings. But it s crazy ! What a their problem with the feet!! X
Have either you Haz or Jaxine been seen by podiatry or referred for orthotics? I have the same problem with my feet and orthotics have made a big difference.
Perhaps you could ask to see a podiatrist for some help or could you afford to see a rheumatologist privately just for one visit. If they see the state you are in, then they may change to seeing you on the NHS.
I agree about the way doctors often write inaccurate letters to GPs. I had one rheumatologist who had written that I had suffered a stroke, which thank goodness, I hadn't done. Another one was asked a question by my GP and although she had seen me numerous times, she wrote in the letter that she "could not recall this lady" Another one listed some medication that I don't take. On one occasion, at a hospital visit, a nurse was looking in my folder and then asked me about something that totally puzzled me and I asked her what she was talking about. She looked at the folder again and said that someone had put some notes about another patient into my file, which I thought was extremely bad. Those sort of mistakes were never seen years ago.
Did the GP tell you why the referral had been rejected? It often isn't that the rheumatologist doesn't want to see you but that the GP didn't send the necessary supporting information with the referral form/letter. The official policy is that referrals are automatically rejected if they don't contain adequate information about your medical history, medication, etc and the referral doesn't even make it as far as the department. I've worked in hospitals that allow them through with virtually no information and others that insist on having all the info before forwarding it to the consultants. Sometimes they'll reject a new referral if you're already on their books and they'll arrange to review you earlier than planned if things have changed enough. Your GP really should have queried why it was rejected so they could resubmit it if the problem was missing details. If it was rejected for another reason I would have expected the GP to contact you to explain and see what else they could do to help you manage. I'm sorry you haven't had the care or consideration you deserve and I hope the triage appointment results in some help for you xx
I was told by the hospital that on preparation for my first appointment they needed some information from my gp. They told me my surgery just sent a duplicate of their original referral and so the hospital cancelled my referral at the hospital because my go did not send the requested information. My surgery says the hospital are trying anything to get their waiting lists down and it is very frustrating for the gp’s and the patients. You bet your life it’s frustrating...it’s downright depressing. I was so distressed when I found out yesterday that I’m paying for it today.., I’ve felt dizzy...extremely tired that Ive slept in bed 3 times today. My husband had to look after our granddaughter as I have not been capable to look after her. It’s just so soul destroying. I thought I’d get a call from my referring gp today as I was told I would yesterday...but no...I’ve heard nothing.
That's awful! It might be an idea to put in an official complaint with the practice manager as it sounds as if the original fault lies with them and they are trying to cover their backsides. All referrals are supposed to be sent with a covering letter explaining why the GP is referring you - this can be put on the electronic referral form if there isn't too much text. There should also be a patient summary detailing your existing diagnoses, medication and any allergies, as well as brief information of any recent relevant appointments you've had. This is all so the hospital can make sure your referral goes to the most relevant consultant as they often have their own specialities within the department. I have seen some woefully inadequate referrals in my time.
I’m giving my gp until Tuesday to get back to me. Then I’ll take action. This has been ongoing since January now and to be honest I’ve had enough. I just want my life back. X
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