Morning all , it’s been a while since I posted , but as it’s all been doom and gloom I didn’t think anyone would want to hear , but unfortunately I’m at the end of my tether . Back in July I had my first post op physio the other was done on the phone (don’t get me started) he wasn’t happy with the swelling ,pain and lack of movement fore foot , told me to contact as a matter of urgency the community side as they did the Morton and I was still waiting a follow up with them . Short part they had discharged me in error so no follow up , this was then done as urgent as the foot was massive , I saw the consultant SHO at the beginning of august and she was really concerned I have a stress fracture on left foot , but the right foot is enormous .
Up to present the scan that was requested as urgent was cancelled in the beginning of September as the policies are to scan for cancer or bone scan only . So my consultant has had to rearrange . My foot is a mess covered in bruises and swelling , my 4 toe is so big that it won’t bend and has caused the toe to bruise inside . He is now writing to my rheumatologist as he thinks it’s PSA which I’ve been saying for 30 years , in the meantime urgent bloods , X-ray and a scan I’m in so much pain I don’t know what to do with myself and to think I’m managing all of this on naproxen and painkillers as I no longer qualify for my biological as I don’t have RA . I’m done I have lost any faith with rheumatology . Sorry guys 3 procedures last year and I’m physically worse off than before .
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Nessa28
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Oh my darling you are in a bad way. May i suggest you speak to PALS at your hospital and put in a complaint of your treatment. They should be able to get things moving. Hugsm darling.xxx
Morning Sylvi , I think half the problem is I went to Pals over the rheumatologist and complained about her and since then they are literally trying to get rid of me . I get Covid and the fact they’re inundated with problems , but literally following last august trapizectomy I was due to be seen follow up March and my thumb is now stuck inside my palm , massive nodule growing on little finger . I can’t sort that out as my feet are truly in such a bad way the bottom of my right foot is like a balloon . I have threatened to go to Pals and I think this is why they’re jumping through hoops , but it’s the debilitating pain , day in day out it’s truly getting me down now . To be fair to the consultant yesterday he was at a loss as to why the rheumatologist is so dismissive even he said there’s so much swelling on your joints how you can have no inflammatory markers beats him
I’m sorry Sylvi I’m supposed to be the happy one as in remission and things and looking out for you all , but I can’t but I do wish you well sending you hugs 🤗 xx
You don't have to be sorry darling, i have some idea of what you are going through. I have had a year form hel too which ended u with sepsis and things are still going wrong. I know what i have going on is different to what you are going through, but we are all in this together my lovely. xxxx
I had sepsis 2 years ago it’s a terrible thing and so scary . You and your husband have both been in the wars . I have always loved reading your post because even when you’re feeling pants you see something good and by nature I’m exactly the same glass half full . But you know occasionally it really gets to you , I hate making a fuss but I’m so fed up with the catalogue of care I have had . Even the 2nd week post ankle operation they sent me to the wrong hospital . I had to be seen by a fracture nurse for post operation care 🤔. I hope you feel better soon xxx
Today is the sort of day i feel crap and feeling sorry for myself because i feel so ill. I hurt with the ra and my hands are so blooming painful. I already have had a howl when i was upstairs. I am sweating so much i should lose weight all the sweating i am doing. Bob took me up the village and when we went into the Co op i had to use my scooter from the ar to the shop and i got what we needed and came out. I am now home on my recliner with my feet up and that is where i am staying today. You takke care my lovely and we are always here when youm need us.xxxxx
Thank you my lovely , I’ll be alright once I Chuck a few more pain killers down my throat , and my self pity party ends . Rest up and enjoy the sun I think it’s coming out soon🤞💐xx
Hi Sylvia I know you love plants .. I’m trying to be all green thumbs and learning as I go..my mistake is I bought plants and I should have kept the label. I now don’t know if I should cut this plant right back or will i just leave it and it dies back itself .. if I take a photo can you advice me please x
Thank you I just feel in a whirlwind . I don’t even know what I’ve got as a primary diagnosis anymore all I do know is it’s painful . Hope you’re doing well following surgery , the swimming looks great 🤗
Any chance of transferring to another rheumatologist? One way that others on here have done it (if you can afford it) is to find a rheumatologist working privately in your area who also does NHS locally. Pay for a private consultation and ask to be transferred to NHS thereafter?
I had a fabulous rheumatologist who went to Addenbrooks told me it was AS put me onto Humira I thought I was in heaven , he leaves , the Trust then look at all the AS patients and audit them for biologics remove their funding , tell me and others that they no longer qualify , and that I don’t have anything inflammatory just severe multi level osteoarthritis and they’re sorry but he was doing what he thought was right ? since this I’m back on 3 monthly steroid injections for hips severe tendinitis elbows , pelvis and back pain bilateral sciatica , Triggering fingers , stuck thumb severe Oa on left thumb , plantar fasciitis both feet sausage toes and feeling like shit . But they’re still going to discharge me because I don’t have inflammatory blood markers . However I was zero negative RA to start with , totally magical how fast my joints are turning on themselves now . The same rheumatologist is private here and I have literally run out of money and steam trying to keep myself going . I’m so sorry everyone I’m so ranting and crying because I’m finding the whole thing so frustrating and now the trusts have merged 3 hospitals Broomfield , Southend and Basildon it’s just getting worse . Hopefully tomorrow I’ll be a happier bunny .
I do hope you are fed a tad brighter you have had a terrible time and here I am moaning on 🤗xx
I know NRAS or NASS (the AS charity) can advocate on a patients behalf, if you havent already why not give then a ring because you've been treated terribly.
Why are they not putting you back on humira when it was working so well.
I know its so tiring but you need help, im so angry for you, if I had the funds I would honestly pay for you to see a private consultant.
Bless you , I’m going to get all the paperwork together and I’m going to probably give to NRAS to look at . This has been 25 years of total rubbish . I truly thought 5 years ago my life was beginning again , but what do you know . Thank you x
nessa 28 you need to write to Vicky Ford mp. My husband did and things started moving. You must live near me as I am under the delights of Broomfield too! My rheummy was Mr Mukhergee and he was wonderful but he left Broomfield.
He was my consultant a truly wonderful man and they literally have told me he got it all wrong , yet he is the leading teaching consultant now . I will talk to this Mrs Ford Wittindale is not worth a light
I totally understand your frustration. They are taking me off all my painkillers, which are obviously causing me more pain.. and want me to do an online course on pain management !! I've heard this from so many people, at a cost of £60. I don't know what's going on...
You seem such a determined woman but this is your health and someone must be held accountable.
If it helps you.. that's your quality of life. And that's how it should be ❤
Hi thank you for your kind words . When I was on Humira I managed to kick everything hard pain medication away and have refused to go back on any of it apart from the co codamol , naproxen , extra codeine for a bad day and diazepam if back is in spasm . I truly believe all the strong painkillers I was on have masked the damage to my joints .
I’ve been grateful to have 2 amazing GP’s who have thought outside the box and helped me through the past 30 years . I was put on a cognitive behavioural course about 9 years ago to deal with pain , my acceptance of my health condition , and all I can say I will be forever grateful . I am a massive control freak with OCD and the training has allowed me to work with my body , helped with anxiety after I fell over in a busy road . I can’t thank them enough for the techniques I have mastered.
I’m sorry you’re having such a terrible time Nessa. Just wanted to send a hug, and also to say re PSA, if you can get diagnosed with this, I believe the qualification criteria for biologics are different for PSA than RA, therefore it is possible that you may requalify? Keeping everything crossed for you. 🤞xx
I don't often comment on here but I feel your pain as I am also waiting for a couple of procedures on my feet/hands which are not going to happen in a hurry. I have RA and MS and to add to my woes I have had a sore arm since my 2nd covid jab 6 months ago to the extent that I can't sleep on it and the mobility in the arm is fading fast. True I am quite a positive thinking person but I am getting to the point of frustration when the only appointment I can get is via a phone with a rheumy nurse obviously working from home because I can hear her dog in the background!!!! About to make a fuss - all I can say is feel the love around you and keep smiling 👍😀
Good morning , thank you for your support . This morning I have my big girl knickers on and don’t feel so lost . I think there are so many people lost in the system now , that it’s an incredible nightmare for everyone . I do hope you have your procedures soon and that makes you more comfortable . Chronic pain is a bugger isn’t it wears you down . Take care and enjoy the day 🤗
What a terrible ordeal you've had with it all Nessa, it sounds absolutely shocking and I feel so sorry for you. I truly hope that NRAS can help you get it sorted but I wonder if a complaint to the Health Ombudsman would maybe help also. The very best of luck with it all. 🤞🤗
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