It's not my style to show anger in my posts but today I can't help my frustration.
I feel like I'm going round and round and round in circles just now.
I received my diagnosis in November 2020 after 3 long years of being told to stop wasting my GP's time and to go away because me being ill was "all in my head". When my case was finally listened to and placed under a scleroderma specialist, I was so thankful to finally have someone fighting my corner who not only listened to me but actually BELIEVED me when I told her about everything. She turned me inside out and upside down with testing for the scleroderma, Myositis and Lupus diagnosis. I was told after I'd had further tests and scans, that my pain meds and skin problems would be reviewed in early January which I was desperate for.
Anyway, January came and I heard nothing about an appointment. Chased it up through the correct channels and was finally allocated an appointment for the 19th February. Last week they cancelled my appointment. Tonight I received a replacement appointment only to discover that to my absolute horror, the appointment isn't till April and to add insult to injury, it's a telephone appointment, not face to face.
I need to state that I completely understand that things are difficult at the moment for the NHS and I'm a patient lady but I'm growing more and more frustrated with this.
NO-ONE has sat me down to talk to me about my illness or how to cope with anything. NOTHING.
By the time April rolls round, I'll have been waiting for my medication review for 5 months which I feel is am unacceptable amount of time. Even my GP won't review them for me because they feel it's my specialists duty to do it.
Things are happening to me that I don't understand. My body is changing in ways I don't understand. Things like my random burst of new freckles and moles are things I NEED to talk to her about. My horrific giraffe rash on my thighs NEEDS to be looked at and explained to me.
I feel poorly every single day in some way shape or form and I was promised some meds so surpress my immune system so that I could feel ok again and not sick.
My issues go way beyond mobility problems. Headaches, sickness, constant colds and infections. I've had 10 sets of antibiotics in the space of 12 months for dental infections! I don't want my next problems to be C-diff due to taking too many antibiotics all the time. They're not working!
I'm struggling to see an end to feeling like this. I can't seem to stop this carousel so I can get off. It's enough to make your head spin!
Can anyone relate and/or advise please?
Love,
H.G xoxox
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Vicrum88
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Hi,I think many autoimmune patients feel this way, especially in current circumstances. While you are waiting for your appointment, why not look into diet and lifestyle modifications that may help autoimmune disease. This may help you to gain some control back over your own health. All of those antibiotics will have had an effect on your microbiome and gut health so I am sure there will be some changes you can make which will help. A good nutritional therapist or functional medicine doctor could help.
We have done this for my son who has mixed connective tissue disease and have had amazing results.
Hi Hidden ! Thanks so much for your reply. I have started to adapt my diet and lifestyle choices to accommodate my illness' but I hadn't considered trying to see a dietician! Definitely something I will look into as I do suffer something terrible with my gut these days. A few months back I was prescribed antibiotics for an infection in my colon, bowl and spleen but it was before my diagnosis so I hadn't connected the 2 till now. I think probiotic drinks might be worth me looking into while I wait to see someone! Thank you for your support and suggestions! It's also lovely to hear that such changes made a huge difference to your son! Fingers crossed I have a similar experience!
Sending Love and best wishes to you and your family xxx
Hi Vicrum88,I can totally understand your frustration. I was in a similar position last year. I sent an email to the hospital, saying that I didn't want a telephone appointment. I explained my reasons why. My face to face appointment was reinstated. I don't think they were happy with me, but I genuinely felt that I needed to be seen and was so relieved afterwards. It was much better to get to the bottom of things rather than 'seething' and worrying all the time. I wish you the best 🙏🏼
Hi AutumnJ ! Many thanks for your reply! I think I'm going to have to take a leaf out of your book on this one and politely insist on a face to face appointment. However, Every time I phone at the moment I have a receptionist barking at me which is a bit off putting but then it's not them that's needing to live with these conditions! I would even be delighted with an email address for my consultant so I can send photos of my legs etc. I seen a new GP today who's going to try and bring my appointment forward for me from April so fingers crossed that he manages to work some magic! Xxx
Hi,I dont really have any advice but i just want to say that i do understand how you feel at the moment as i am in a similar situation. It feels so isolating and frustrating. Getting an appointment so far ahead is a real blow and it is hard to understand why no one can give you 30 minutes on the phone to answer some questions before then. Life is challenging at the moment and to be given a diagnosis without any support is very hard. I do hope once you have your opportunity to speak to a professional you will feel listened to and get some answers.
My legs have looked just like yours for many years but i have no idea what it is and hasn’t really caused me any problems.
Hi blueberry20 ! Thank you so much for your comments. When I say what I'm about to say, I genuinely mean it with the greatest of respect for you - but I am so glad I'm not on my own with this (as selfish as that sounds!) And that other people like yourself can empathise with me on a level. You're absolutely correct! - this is by far the most isolating things I've ever had the displeasure of dealing with and it's awful awful timing. If it wasn't for this group, I would feel completely alone with this because it's so rare. This isn't as common as for e.g. Diabetes etc. We have access to limited information about this disease unlike other autoimmune diseases.
As for the rash on your legs - i believe it's called Levido Reticularis. Mine started as a very faint "net" like pattern a few months back and then spread suddenly and deepened in intensity and colour which was rather alarming! It now never fades and is more vivid than ever! It's destroyed the skin on my legs.
Give me a follow? Two Newbies to this are better than 1 😊
Hello Vicrum88. I can totally identify with all you say. I did the back and forth to GP with various symptoms over several years and felt totally frustrated, let down, ignored. From start to proper hospital diagnosis took about 4-5 years. And that was in times before Covid. There will be light at the end of the tunnel for you eventually. The pandemic is holding everything up at the moment and my appointments too have been cancelled, delayed or just changed to a telephone call. I'm sure as time goes on and the risk of catching Covid reduces your appointments will take place. I'm sure you will feel better once someone prescribes the immune suppressant drugs. I've been through the weird giraffe marks thing and the telangiectasia (red spots which I still get even in my mouth). They do calm down a bit once you're on the proper medication. There are online SRUK support group for our disease? I belong to an online one (we zoom meet on Sunday mornings) and learn from each other. Everyone's experience of the disease is so different. Have you visited the SRUK website - loads of info on there. I wish you well. Betty
Like most here I really relate to your frustration. I was diagnosed with systemic sclerosis at my last face to face in June - was already shielding on Mycophenolate due to having existing CTD diagnosis. My rheumatolgist phoned me again in September and late November. In November she backtracked my scleroderma diagnosis saying it wasn’t her specialism so unless I felt happy to accept a “less well defined CTD” diagnosis then she felt obliged to pass me back to her colleagues who see the scleroderma, Myositis and MCTD patients in a different clinic.
This was all bad news for me as they were the ones who fobbed me off and almost discharged me a few years ago. Yet now I have positive Sclero antibody but also a lovely rheumatologist who specialises in Lupus/ UCTD.
Anyway I’m better off than you I think because I am at least treated with immunesuppression and Iloprost infusions.
But all my specialists were redeployed for Covid critical care in December so I’m left in a diagnostic limbo without quite knowing what to do or whom to report recurring UTIs (and antibiotics galore) to or skin rashes, other changes. GPs have been as much use as an ashtray on a motorbike!
I phoned yesterday and was told that my consultant is still going to be leading my care for now and will phone review me in March -April rather then this month as she had said - but is away on leave just now. Her catch up time is estimated at 6 weeks presently so heck knows what the poor woman will be coming back to.
The rash/ marbling looks like Livedo Reticularis - common with CTDs- definitely worth showing your consultant when you are finally seen.
Hi. I’ve had scleroderma for 15years now and have annual appointments at The Royal Free but have not had one now since May 2019 and at the moment my next scheduled appointment is a video call in November. I have had telephone appointments with my local rheumatologist and respiratory consultant but have not had my biannual Iloprost or some surgical fat transfer to help my mouth, planned for July 2020. Hopefully all will resume in due course. My main problem at the moment is calcinosis and infected ulcers. I’m coping OK but I think you should have the opportunity to have immunosuppressants to get it under control. I took these for 10 years and they stopped aggressive development of the scleroderma,
Hi Vicrum. You have some pretty nice livedo reticularis going on in your picture which is associated with a few connective tissue diseases but not so much with scleroderma. If rheumatology is not aware of this, please let them know. It’s not something to ignore and you should be seen sooner rather than later with a symptom like this.
I’m so sorry they keep delaying. You could also try to make an appt with dermatology so they can biopsy the livedo. If pathology came back with vasculitis or something, maybe rheum would be forced to schedule you sooner.
Hi Jmiller623 ! Thanks ever so much for your support and comments!
The Levido Reticularis rash is quite impressive isn't it?! I have indeed been diagnosed with Levido Reticularis back in November but it was very faint compared to now. So yes, Rheumatology is aware of it but they're not aware of how bad it's gone. I'm desperate for her to see it. When I go outside, I get pain on the more intense areas of the rash. The pain feels like someone has thrown hot pins at my skin. Today I seen my GP and asked for a referral to dermatology due to a sudden explosion of freckles and moles all over my body, including a Blue Naevus that has suddenly appeared on my face but I've been told it's nothing to worry about. For me there is no logical explanation for hundreds of freckles and moles to suddenly appear all over my body (especially on my upper back, chest, shoulders and upper arms). I'm just hoping that my pleas for help haven't fallen on deaf or uninterested ears once again.
I have bad livedo with SLE which is controlled with Plaquenil and aspirin. Doesn’t surprise me one bit that you have a burning/painful sensation with the rash. It’s basically like intermittent, temporary cutting off your circulation to the top layers of your skin. Your skin will feel like it’s constricting and flushing over an over with livedo.
The freckle/mole observation is interesting. The same thing happened to me and I am also littered with tons of cherry angiomas as well that were never there and seem to have popped up in about a years time. They are everywhere esp my chest and abdomen. I also got a weird dark, venous pooling looking rash on the fatty part of my hips as well. They felt ice cold. Interestingly, derm told me to up my antihistamine to twice a day and that actually helped.
I really hope you can get an appt sooner. Really feel for you. Wish I could give some tips but it’s hard when you have no clue what’s going on. Definitely a very frustrating situation.
You've been great help! More than you realise! You're the first person to actually explain the biology to me about it and what's actually happening. I too have lots of little cherry dots but I have more freckles in comparison to them. I've noticed a few cherry spots on my bottom lip recently actually. I also have hyperpigmentation of the skin on my right foot (photos on my other posts) which has now also started on my left foot (I've had the circulation in my feet and legs tested due to having Thrombophillia and circulation was normal despite my Rauynards). Lots of things are changing all the time. I'm fascinated by it all. I worked in the medical industry for a long time and had never heard of these diseases till my own diagnosis. It's all a learning curve.... Even for the doctors and specialists because every case is unique. We're all learning aren't we? Xxx
We are. I am an internal medicine physician scientist with an MD PhD. I was fired during my time in hematology and oncology fellowship when I fell ill. But I will say that I’ve learned so much on this forum beyond what any attending could teach me. Experiences are worth their weight in gold when it comes to knowledge.
Which brings me to a very important point. If you have documented thrombophilia or a history of blood clots then livedo is nothing to mess around with. They should test you for antiphospholipid if you have any history of clots or miscarriages. If you’ve had clots in the past, I’d be barking up a heme and rheum tree like a rabid dog if I had livedo like that.
You should join the lupus UK and Hughes syndrome community as well. You might find more advice about navigating the healthcare system more efficiently in these communities. The moderator for lupus UK is particularly good about guiding people where to find appropriate providers. I live in the US so not much help with navigating NHS.
I completely agree with you. I learned more when I was ward based than I ever did sitting in a classroom or lecture. I had real life experiences with real people that I would never have had otherwise. Unfortunately, like yourself, I'm now no longer nursing which is sad. I genuinely loved my job so it's been hard to let that go. I'm sure you'll feel the same as me about not being able to work now.
Thank you for touching on a really important point with the Thrombophillia. I have Factor V Leiden. I've had 2 previous DVTs in my left calf and I've had a previous PE. Both calf DVTs were during pregnancy. The PE was a year after the birth of my son.
Amazingly, I'm not on daily blood thinners (I feel that I should be based on my history alone!). I've spent many weeks self administering blood thinning injections after each episode of clots and also after any operations I've had I require 6 weeks worth of blood thinning injections. I believe I'm a high risk when it comes to blood clots. My child is disabled and I often wonder if my blood clots had anything to do with the fact he has disabilities.
I will certainly look into the other community you've recommended. Any support is great support at the moment and is welcomed with open arms. I know the first channels to take with the NHS first contact will be the Patient Advice and Liaison Service. Xx
Yes. Our identities are crushed and will be forever changed. I just keep my fingers crossed that I’ll find my purpose and place in due time.
You need to be tested for antiphospholipid syndrome. They need to test for anti-cardiolipin, anti-beta2glycoprotein and lupus anticoagulant esp with your thrombus history. Sometimes these same antibodies are also associated with Sjogrens (anti-Ro or La) which can cross placental barrier and cause birth defects particularly of the heart. Antiphospholipid can also cause placental perfusion insufficiency due to slurry blood flow.
Antiphospholipid with clot history is usually placed on lifetime warfarin. You could try full dose aspirin 325 mg in the meantime to see if it helps at all. I’ve attached a really good article about APS and it’s association with CTDs. See if anything resonates with you.
You 100% need a legit full panel rheum work up and should be seen by rheum and hematology at the minimum. Crazy to me that they aren’t worried about you. With your medical history and prominent livedo, I’d have you in my office same week. Ooooo I feel for you.
I will most certainly ask for further testing for the illness you've mentioned about. It could well be the missing piece of the puzzle for me!
Jmiller, the only thing I will disagree with you on is what you've said about our identities. Our identities will never be crushed because we'll never stop fully being the people we are. There is a place for us somewhere I promise that much! Look at what you've done for me here on this site alone! We will never stop wanting to help people because that's what we do. You're still a doctor whether you're working or not. I'm still a nurse even though I can no longer physically do that job. Don't ever forget who you are. Don't let this illness define you. You've got this ❤ xxx
Lots of people on here totally understand how you feel and i'm one of them, I was due to have a telephone appointment on the 2/2/21 which would have been an 8 month after my previous one , however on the morning of the 2/2/21 i got a phone call saying the consultant was off sick and they would send me a new appointment , it arrived in the post last week , 26th September !. There are lots of questions i want answers to. so whilst things move slowly downward i have to wait till September .... When i rang to ask if they could make one slightly nearer i was made to feel like i was being selfish and difficult .... even though i only asked the question politely ... Hopefully things will start to get easier with time... take care and good luck..
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