Hi everyone, I desperately need the advice of people who can understand my situation. I am afraid for the first time since I became ill in 1990 that I am at my wits end and simply do not know what to do.
I had a cavernous haemangioma removed from my nasal cavity in February. I suffered a haemorrhage afterwards and was in critical care for four days. Due to the fact that I am obese I had no constriction stockings.
on the second day I began to develop left leg pain. It felt like a stiffness that hurt when I walked. I have been on the list for a double total knee replacement for the past 8 years so I thought I had just twisted myself.
since then the pain exacerbated in my leg to the point where I cannot hardly weight bare, my legs are both stiffened and to bend or straighten them is agony.
I saw a GP who said I am nit examining you, you are a complex case above my pay grade call your Rheunatologist.
The Rheumatology secretary said don’t ring here call the helpline.
Thankfully the Rheumatology Nurse rang the next day, spoke to my Rheumatologist and git a six week course of steroids emailed to the pharmacy for me. Within two weeks I was walking so much better and at the end of six weeks my pain had eased considerably.
Within two weeks off the steroids the pain returned with a vengeance. I started having soaking night sweats, nausea, stomach pain so I went to see a GP.
He told me I cannot talk to you about all your issues I will concentrate on the night sweats and abuses as they are red flags . He examined my stomach ordered bloods and found a lump in my breast. He then referred he urgently to the breast clinic. After six hours there they found no lump but expressed concern about my mobility and dexterity. They suggested referral to the MSK Team.
I rang Rheumatology. The nurse rang me back and said she was sorry but as there was no inflammation in my blood the Rheunatologist would not prescribe anything to help .I told her I am not sleeping, the pain is dreadful and no one has looked at my legs. She said perhaps you need CK bloods I will ask him.
I tried to make an appointment with a GP , nothing for three weeks.
I self referred to MSK as I am now taking half an hour to get up and down the stairs. They have just called to say they cannot touch me unless they kniw what is causing my pain. I had a meltdown. I am sleep deprived, in awful pain and I cannot stand unaided let alone walk. Not one Doctor has deigned to look at my legs.
Any advice gratefully received. I am nit a person who cries and feels sorry for myself but I cannot go on this way and just do not kniw who to turn to.
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CecilyParsley
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Sorry to hear all this that you've been through. What dose of steroids where you are when they were stopped?
I thought the dose was supposed to be tapered down, gradually?
(By the way, I didn't have the stocking, on the way to theatre I asked & was told it doesn't matter as they 'll put me on the machine instead - so there is an alternative)
Hi Mary yes I was on 15 mg reducing by 2.5mg weekly.
They told ne they would put me on a “bubble thing ‘ but dint. My ENT surgeon was flustered at the amount of blood I was losing. Under General the op would have taken 20 minutes but under Local in took 2 1/2 hours.
My husband went down ( by halfs if I remember correctly). He would have been on 2 mg for a couple of weeks, then 1.5 then maybe 1mg for a while then 1mg on alternate days.
Why can't the GP put you on 2mg for a couple of weeks & see if that helps.
I'm afraid I don't really know anything about your conditions, so can't really comment.
However, am extremely experienced in the NHS care ( or lack of ) in South Wales.
I'm afraid it's just not working as it should. There is good care but also when things go terribly wrong . . . . I was traumatised by what my husband was put through.
You have to keep speaking up & keep fighting for the care you need.
It's an uphill battle, yes. Rest a while if you must, but keep on fighting xx
Yes 2.5mg to nothing. That isn’t unusual. I am often on 30 mg fir my asthma reducing by 5mg weekly then down to nothing.
The GP has refused to give ne 15 mg fir my kegs but happily writes a prescription for 30 mg fir my chest. It makes no sense. The Rheumatologist is saying the bloods show no inflammation so refuses to prescribe steroids even though they helped me.
I have fought for the past 35 years. I am sleep deprived, in agony and no one is willing to look at me even. It gets you down xx
Thank you Mary My diagnosis has been changed with every single Rheumatologist I have seen. It was bad enough being told I had Lupus. My husband and I just got the shock over with when Rheunatologist number 2 said no not Lupus it is Bechets. Next came the Low Grade Lymphona Diagnosis. I was told I would live approximately four years. I challenged it went to a Centre of Excellence in London and told categorically that unless someone else took my blood tests for me I had Lupus. The Local Rheumatologist said ok Lupus and Bechets. He left and the new Rheumatologist upped my medication above NICE guidelines. I developed vision issues and went to Specsavers and was told my eyes could rupture. I was sent immediately to the Macular Unit and told to stop the medication immediately as I had developed macular odema. When I saw the Rheumatologist again he said I will tell you straight all you have wrong with you us Fibromyalgia and hysteria? I challenged him as to why he would say such a thing when it was his prescribing that had caused the issues with my eyes. He said whether you like it or not you have Fibro and you need to get a new Optician who knows what they are doing. I got up to leave and he laughed and said oh by the way if you get sick you will prove me wrong. He then tried to discharge me. My GP was outraged and demanded a second opinion. The next Rheumatologist said no Lupus, No Bechets and definitely no Fibro so we will put you down as UCTD. The next one said MCTD and the current one says Bechets and not discounting Lupus.
I tell you this because I am terrified of getting back on the merry go round of clinical misdiagnosis. I do understand AI conditions overlap and that they are challenging to diagnose but so often we get lost in the crossfire.
I have fabulous Respiratory, ENT and Orthapaedic Consultants. The care I receive is first class and I could not ask for better. For that I am so grateful but Rheumatology seems to be a huge barrier to better health for so many of us.
You are right I will pick myself up again. Today I had hoped for help again and got knocked back again and it broke me for a bit. Thank you so much for your kindness xx
Hi Cecily.I'm sorry to hear you are suffering like this. It's unconscionable for your GP and rheumatologisy to not treat you - clearly there is something very wrong. Regardless of your blood results, you must have some kind of inflammatory process going on to have responded to the steroids so positively.
Did you tell your GP and rheumatology that you had a good response to the steroids? It sounds like you should not have been taken off them.
As others have told me, you can have raging inflammation in your body and yet have 'normal' blood results. Plenty on the polymyalgia rheumatic (PMR) site here will tell you that. I was in a similar situation with extreme leg pain with no inflammation showing up on tests. My rheumatolgist at a top London hospital refused to treat me with anything other than Hydroxychloroqine despite my decline and I had to move to another rheumatologist who put me on a small dose of steroids (5mg) which has helped. I'm still a long way out of the woods, but I have a consultant who listens and takes action.
Please get back to rheumatology and your GP. Pitch up at A &E and refuse to budge until you have proper care and treatment. The fact your case is complicated is not a reason to keep bumping you from one Dr to the next. Those drs are under a duty of care to treat you.You are clearly very unwell.
I'm sorry I can't be more helpful.
Do you have a formal diagnosis of Behcets now? If so then there's a strong case to urgently refer you to a specialist behcets centre. Are you in Scotland? I'm not sure if there's one in Edinburgh or Aberdeen . Perhaps someone else on this forum can advise.
Keep in touch and don't give up - I know how hard it is to fight when you are feeling so very unwell for such a long time 🤗
Thank you so much for responding. Niw I am crying again. I don’t recognise myself I feel utterly despairing. I am 62 and crying on the phone like a baby.
I have been given an appointment to see a Rheumatologist on 25th July now. The thought of three weeks without sleep, in such pain and not being able to do any of the things that distract me such as walk with my dogs, go into the garden or even just sit comfortably in the car and go for a drive is so daunting.
I am in Wales, no Centre if Excellence here and my Rheumatologist has confirmed Bechets but still has not ruled out Lupus too. In Wakes we are not permitted to get a referral to a Cof E if our Consultant can provide appropriate care. I am genuinely shocked that he has taken such a dismissive approach as the nurses always tell me how he is so different to the others here and really cares. He has called me just to check up on me , liaised with my ENT Consultant regarding my surgery and emphasised I can call him anytime I am in trouble. Of course now with all the stress and upset I have full blown oral, nasal, and genital sores too. I have noted when I get the genital sores I have no control over my bladder at all . I really am in a mess. I know there are no magic wands but the lack of care is truly abysmal .
Thank you again for responding and for relaying your experiences of steroid use. It gives me hope xxx
I know how it feels to be crying like a baby. No shame in that. If the pain you are in were to be caused by someone externally torturing you, everyone would see that and be rightly horrified, fully understanding why you are crying and breaking down with the pain. They don't understand that a deranged immune system can produce the same level of physical horror because they cannot see the mechanism behind it.
Surely you are not getting adequate treatment for Behcets because on everyone's reckoning you are a 'complex case' and they feel overwhelmed treating you. Their present reluctance demonstrates that!! Please push your GP for a referral to a centre of excellence and appeal to whatever primary care equivalent there is if refused.
Also, why can't you ring back rheumatology and ask for some more steroids now if that was the only thing that has relieved your pain? Have they given you anything for the ulcers in the meantime?
Small vessel vasculitis is horrible and sneaky, not showing up on scans but causing so much pain.
Maybe you could ask for a leg MRI to see if you have myositis or any other form of inflammation going on in your legs. Might you have some form of oedema pressing on the nerves? I believe with small vessel vasculitides this can happen when fluid escapes the blood vessels. They should also be checking the joints too. Either way, it sounds like inflammation out of control and a specialist Behcets centre should be able to get to the bottom of it and try you on different drugs.
Hopefully someone else will be along soon too to help. Is there an advice line at the Behcets charity you could also call?
I know that others have tried extremely hard and failed to get anywhere with the Cof Ereferral. I was fortunate to go to St Thomas`s Lupus Unit before the guidance changed and diagnosed with SLE l of course local Rheumatologists refuted it and that was that. I soon had a Fibro and “ hysteria” diagnosis until the next Rheumatologist said not Fibro at all but UCTD then my current Rheumatologist said definitely not Fibro but Bechets and maybe Lupus too.
My podiatrist has a Doppler so I will call her tomorrow and at least get that ruled out.
I have now rung the Helpline 6 times in total and the last tine the nurse read her email to me as she typed…this lady is in severe pain, the GP will nit help with either steroids or pain medication. No one has even examined her legs. She is sleep deprived, cannot stand unaided, and is unable to walk without severe pain. She is struggling with bending or straightening her legs. Just getting up and down the stairs is difficult and takes significant effort resulting in falls. Please can you provide urgent advice and support. That was a week ago last Thursday. There is absolutely no point in asking again. When this is sorted I intend to take a complaint to my Health Board to highlight the inadequacies and failures I have encountered but for now it is just survival. Xxx
If I were you, as we are in the middle of an election and health care is a hot topic, I’d send an URGENT email to your MP spelling out exactly your predicament and ask for urgent help. They have the capacity to make people do things and quickly, so lay it on thick cos they will want your vote if you can even bear to think about that!
I hope you get the help you need and feel better soon. 🤗
Thank you so much. Ordinarily I would absolutely follow your advice but sadly my relationship with our “ missing “ MP is not good. He has failed to respond to my last three letters about issues that have caused me concern both locally and country wide.I would be the last person he would help sadly. Our MS is even worse and treats myself and a group of like minded people with disdain. I think his terminology was “Trots” which we aren’t but sadly he would not know the difference.
I really appreciate you taking the time to give me advice and thanks for the well wishes xx
Hey Cecily so sorry to hear you're going through all this! I'm really sorry I have no advice as I'm clueless to all this lol, just wanted to send you a big cwtch (hug) and hope you get the help you deserve asap. 💗 xxx
Thank you so very much Haylz. I am more positive today trying to arrange a private Doppler so at least I can rule one thing out. I managed to stand long enough to make a malted bread dough which us on it’s second proving so that makes me happy xxx
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