Help Please 🙏🏻

[CecilyParsley]

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.

[Mary-intussuception]

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)

[CecilyParsley in reply to Mary-intussuception]

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.

[Mary-intussuception in reply to CecilyParsley]

So what was the last dose from 2.5mg to nil?

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

[CecilyParsley in reply to Mary-intussuception]

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

[Mary-intussuception in reply to CecilyParsley]

But you HAVE been diagnosed!!! Crazy isn't it, leaving g you to suffer like this . . .

I know it gets you down.You're not alone though, keep remembering how Precious you are and that they are all in the wrong.

That's not paranoia - the system IS atrocious. It's not patient friendly nor medic friendly. Worse than ever & using Covid as an excuse still.

You will get up again xx ❤️

[CecilyParsley in reply to Mary-intussuception]

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

[lottagelady in reply to CecilyParsley]

Looking at your legs, is there anything different about them at all? EG if you were to have had a DVT because of the surgery, (and 4 days in ICU without compression stockings or the 'machine' is ridiculous. |I'm obese and they put them on me and I've had 24 lots of surgery!) they could have become swollen and had hot red lumps on them, anything like that at all? My legs have changed colour from the knee down and hurt, and have had 'venous stasis dermatitis' where the skin is sort of weepy but dry and flaking as well? It's because the blood isn't moving up and down the legs and is pooling instead. Exercise helps, but when you are like you and me, it's not possible! You can get a machine that helps it and keeps your legs moving that you can use at home when sitting. Seated leg exercisers. Google images for venous stasis dermatitis and DVT and it shows you pictures which may give you some clues? Also

webmd.com/pain-management/s...

[CecilyParsley in reply to lottagelady]

Hi Lottagelady, thank you for your response. Things have moved on. I saw a GP who took tine to actually examine me. She noted three brown lumpy marks at the top of my calf. She suggested panniculitis. She took photos and sent them to my Rheumatologist.She upped my morphine and booked me in with the practice physio this Friday just to map my lack of movement in the leg.

When I got home I received a call inviting me to see the Rheumatologist the next morning as a cancellation had come up. Long story short he ordered 16 lots of blood, put me on steroids and blood thinners then attempted to bend my leg. I screamed and he rushed to the phone to get he into DVT clinic. He was told given the length of time it had gone on I needed to go to the Medical Assessnent Unit. I had a femoral Doppler and 7 1/2 hours later I was told there is no blood clot and discharged. They were concerned at my pain and inability to bend the leg but as my GP and Rheumatologist have now looked at it I was happy to leave as staying would have meant sitting in a chair all night as there were no beds and any tests would be arranged by the day staff.

Knowing there is no clot I have booked a Chiropractor Assessment on Saturday as I wonder if the issue is my back? My GP says it us nit my tendons. The steroids have enabled me to bend the knee slightly but the pain is stopping me sleeping and walking and standing is still excruciating.

Despite being morbidly obese I had been walking the treadmill and out with the dogs daily but now everything is a struggle xx

[lottagelady in reply to CecilyParsley]

Oh bless you, glad to hear it's not DVT! That was my main concern when I read your post! Well done for being able to walk your dogs etc, my poor things haven't been out since my daughter died in 2022 as I just can't walk now for the pain in my back and am so socially anxious I can't take them on my own. My pain is due to a massive (think 8 months pregnant) abdominal hernia that I've had for around 15 years. I'm on Fentanyl for the pain but any standing or walking and it's not 'cutting the mustard' now. The more you can't do the worse it gets, and all weight loss surgery referrals are closed. It's a miserable existence ... fingers crossed they will now find out what yours is - keep us posted!

[CecilyParsley in reply to lottagelady]

Oh you poor thing. I have a hernia but it is my knees that are crippling me. From so many falls I have one cracked knee cap and one loose knee cap which slips. They are bone on bone but they would not operate until I had lost weight. I got the treadmill and built up from 5 miniutes twice a day . I lost 7 stone 2 pounds and was due to have surgery but the day before was diagnosed with double plueirisy. The next time it was Underactive thyroid, the next, ear nose and throat infection and UTI, the next they picked up an arrhythmia so took me off the list while I had echo and angiogram, nothing found. By the time I got back to pre assessment clinic I had gained a stone. Get it off they said and we will do the op. I went back and saw a different anaesthetist who to,d me he was very disappointed in me? I said I lost 19 lb. Turns out I lost over 2 inches in height too. He was so rude telling me that my new knee would “buckle under my girth’. I told him to stick it and walked out. Then my legs began to give out. I had 23 falls in a year, tore my Achilles tendon, tore my hamstring, broke five toes, broke my nose again, knocked my front teeth out again. I saw the Orthopaedic Surgeon and he said eight years ago your knees were some of the worse I had seen why on earth haven’t I operated? I told him they keep on refusing the surgery. I was put back on the list. I then fell and tore my meniscus. Shockingly they would do weight loss surgery but not the keyhole surgery to repair the tear.

Currently I was due the anaesthetist assessment for the first knee replacement under spinal anaesthetic when this happened with my leg so now I am on hold again. Rightly so this time. If I can move I will lose the weight. It is very painful and I can no longer walk far but I can do it several times a day and stand and do things so keeping my metabolism going. Currently just standing up to go to the loo is a few steps too far.

I do understand you situation. We are currently using a wonderful dog walker who takes my boys running free with other dogs across the mountains. He takes amazing photographs too. My husband walks them individually on the lead while I sit at home. It breaks your heart doesn’t it?

I am so very sorry to hear that you lost your daughter. What a dreadful loss for you. Life is so cruel at times. I do hope you get support. I get 9 hours care a week which really helps us as my husband has had two heart attacks and suffers with his mental health. Look after yourself xx

[Hoofprints]

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 🤗

[CecilyParsley in reply to Hoofprints]

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

[Hoofprints in reply to CecilyParsley]

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?

Hang on in there 🤗🤗

[CecilyParsley]

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

[Star13]

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. 🤗

[CecilyParsley in reply to Star13]

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

[Haylz2109]

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

[CecilyParsley in reply to Haylz2109]

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

[Haylz2109 in reply to CecilyParsley]

You're welcome. Glad you're more positive today and that you managed to do something that makes you happy 😊💗 xxx

[CecilyParsley in reply to Haylz2109]

Thank you ❤️ xxx

[Ktmc99]

I am so sorry you are going through all this and I am appalled by the attitude of your GP! Unfortunately Behçets is still a mystery to many health care professionals and so we have to be our own advocates. I know it’s difficult when you are feeling so low physically and now emotionally but you need to keep pushing for answers and help. Especially as you have a diagnosis.

No-one believed there was anything wrong with me despite having had symptoms from the age of seven. I was dismissed as being an attention seeking hypochondriac at every stage. All my BLOOD TESTS WERE NORMAL, and even during a major flair my bloods show no sign of inflammation. I was hospitalised and had to have fluid drained from my knees due to severe inflammation but my bloods were still normal!

I ended up being diagnosed by a Genito-urinary consultant after I self-referred looking for a second opinion after my GP told me I had herpes but refused to actually test to confirm. I then had to battle my local health care authority to be referred to a centre of excellence as they are all in England and I live in Scotland- they were fighting over who should pay the bill!

Fighting on is hard, especially when you are struggling with fatigue as well as pain and all the other symptoms BD brings. Blood work with BD doesn’t always tell the full picture. It never has with me. Keep pushing for a referral to one of the centres of excellence.

One of the things I started doing is collecting information and evidence of BD in a big file. I downloaded all the information and help sheets from Behçets UK and anywhere else I could find, and kept a record of all my symptoms and doctors’ visits /consultations. I recorded every symptom, no matter how small, whether I thought it was part of the disease or not, together with notes on my mood and abilities that day. It was a lot of work but doing this helped build up a picture of what was going on. I take this file to hospital if I need to go in as an emergency as the majority of healthcare professionals have no idea about BD. Don’t be afraid to learn and use all relevant medical terminology. Speaking with Doctors on their level helped me be taken seriously (to the point I was asked if I was a doctor). It shouldn’t be this way but unfortunately it is.

I’m sorry this is such a long reply and I hope things get better for you soon. X

[CecilyParsley in reply to Ktmc99]

Hi Ktmc99 honestly I thank you so much for your response. You do start to feel as if you are losing your mind or the biggest hypochondriac / biggest baby on the planet don’t you?

Things have moved on for me but mostly of my own doing. Following the Doppler which showed good blood flow on both ankles I finally had the pain clinic appointment I had waited for for a year. To say it was abysmal would be an understatement. Long story short she refused to discuss any other pain than my pelvic pain and refuted the diagnosis by two gynaecologists and a private pain specialist that I had pudendal neuralgia. It had taken 6 years to finally get a diagnosis and she discharged me saying the only service she would offer was a psychologist.I felt totally broken and to my horror just sat and cried. This prompted my husband to ring our surgery and insist on an appointment with a permanent GP.

She was amazing. She found dark brown lumpy spots on the back of my calf. She took photos of them and emailed them to my Rheumatologist, suspecting panniculitis.She referred me to the practice physio just to log my restricted movement in the leg and upped my morphine.

When I got home I had a call to ask if I would like a cancellation for Rheumatology the following morning..of course I would.

My Rheumatologist was not his usual cheerful welcoming self and I too was very different. He asked how I was and I responded you know how I am I am nobody’s bloody problem and I have been kept suffering and sleep deprived since February. He examined my leg and rushed off to refer ne urgently to DVT clinic. They refused to see me as it had been ongoing since February so I was admitted to the Medical Assessment Unit for 7 1/2 hours. They did a femoral Doppler and took 16 lots of blood. No blood clot 🙄 as expected so I was discharged l

I saw the physiotherapist who felt I needed muscular skeletal assessment from neck to feet so has helpfully referred me to herself at the hospital for several 45 minute appointments.

I then went to the Chiropractor against the advice of the Rheumatologist and physio as I just needed some relief.She was really amazing and found three issues. There is a very hot spot where my kneecap is loose, my femoral head is rigid and not moving at all and the IT band is so tight trying to hold my knee in place the knee cannot bend . It was such a relief to hear. I had an hour long assessment and she adjusted my ankle which was a relief in itself. I had my first treatment and she was very gentle. The plan is to pull the femoral head free but she is working on the IT band first to ease the pain of it and acupuncture on my kneecap. I get my second treatment tomorrow. I know it might not work but she is trying to help me and that is everything.

I also rang my surgery and spoke with the Practice Manager about my abysmal experiences . She was appalled and I now have the lovely GP as my banned Doctor and a standard double appointment. That is the first thing really that has gone right for me and I am pathetically grateful.

As for the Centres of Excellence, in Wales now you cannot get a referral if the Health Board feel they can meet your needs and as my Rheunatologist has an interest in BD there is no chance of it sadly.

You have done amazingly advocating for yourself . I am very much afraid currently I have little fight but in 2009 after being diagnosed with Lupus I did as you did and kept a symptom and pain diary with photographs and it certainly helped even though some Consultants took the view that I had read it so thought I had it 🤬.

Sorry long response but I do sincerely appreciate you taking the time to respond to me xx