Doctors don't listen, so frustrated: When I was... - LUPUS UK

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Doctors don't listen, so frustrated

Freyagoo profile image

When I was much younger I went through a treatment to desensitize me to UV light. The dermatologist said it was likely I had discoid lupus. This was maybe 15 years ago.

Since then I've been diagnosed with ME, fibromyalgia. I have joint pain but blood tests for arthritis come back negative. I wake stuff and sore every day... Unable to bend my fingers... X-rays and scans snow nothing wrong with my hands.

I have ibs, I get pancreatic pain sometimes ( had an ambulance called by the doc once when he saw the pain level) - intermittent breathing problems with my nose, it feels like there's a steel band around my chest. This is a good day!

I randomly came down with neuralgia in my face and feet this year.

I haven't noticed the facial rash in quite a few years but over the last week it's come back and the joint pain and muscular pain in having all over is unreal.

I went through a barrage of blood tests a couple of years ago, my WBC is always high and they gave decided this is just normal for me.

I moved area about ten years ago and they treat every issue I have as unrelated. I'm so confused at this point if it could be lupus or not. I really want to march in to the doctor's with a list and just say... You can't simply just blame this on fibro all the time.

15 Replies

Freyagoo-

This is a huge frustration when we have a long list of issues and the diagnosis doesn’t seem to fit. Fibromyalgia is a real illness - seems they think neurological in origin - and causes a lot of disability as well as related issues like IBS.

While neuralgia in your face may be a neurological sign of lupus, it may not be. The doctors should have been alert and told you what the possibilities were.

At least what is used in classifying lupus, the white blood count is low, not high.

While you can have general issues that sound like lupus, it really does have to be clear before doctors know it is lupus. They want to know they are looking at autoimmune disease, seeing signs of inflammation. Maybe if you keep that in mind, it will help to know why this fat lupus has not been diagnosed.

What does your rash look like? What does testing show? Maybe your illness has not evolved so that they can make a diagnosis. That happens.

Have you seen a rheumatologist? Stiff fingers deserve an explanation.

I know you are really suffering. I hope you get answers soon.

XxK

Freyagoo profile image
Freyagoo in reply to KayHimm

Yea the rhuematologist simply said there's nothing wrong diagnostically with my hands and diagnosed fibromyalgia on response to the other pain I have.

As for the WBC it's usually attributed to my medication or allergies. Idk how it works but they never seem to think anything is worth diving into.

My hands for example, I have codeine for the pain it's so bad it can reduce me to tears, but because the x-ray only showed "light and normal wear and tear" and the ultrasound showed no problems, they simply said they dunno and left it there.

The rash is light at the moment across my cheeks and top of nose, it spreads a tiny amount to my forehead. It looks like a light sunburn, but, the day it came up I had only been outside for 10 mins in the shade (after 7pm the back garden is entirely in the shadow of our house) so it doesn't seem like it should be sunburn.

It used to be a problem when I was younger but I really thought maybe the dermatologist was wrong back they. But I also remember being incredibly exhausted after going out during summer.

My fibromyalgia/ME symptoms have been progressively getting worse this year and I'm not sure that's how those diseases work. Each flare up is more painful and more exhausting than the previous one no matter how much care I put into pacing and sleeping well etc.

I'm sorry I just don't know who to talk to or what to do at this point.

KayHimm profile image
KayHimm in reply to Freyagoo

I wonder if you felt confident that all your symptoms were not lupus related and had faith in what the doctors are telling you, you might feel better and know where to turn.

What it seems they are saying is there is not an inflammatory issue in your joints. That does not mean there is no pain - the wear and tear arthritis can be very painful- but that is not the kind of arthritis people with lupus or other autoimmune diseases get.

Your doctor can explain to you why your level of WBC is not concerning. What you said is important. You want to know “how it works.” It is their job to give you a context. A very high white count might be extremely concerning under certain conditions while a mild elevation is not significant. That is their job to reassure you.

You might want to ask your doctors why they think you don’t have lupus. That should help. I suspect you will get an answer like your symptoms do not seem do reflect an inflammatory condition. Your blood tests do not show signs of inflammation that have us worried.

Fibromyalgia is a life-altering condition. I am serious when I say you probably feel worse much of the time than I do when I am in a good period. You have chronic pain and fatigue for which there is no easy answer. Research is trying to provide answers.

You could try to find a fibromyalgia specialist in your area. It is important to feel that you are understood by your doctor.

Wishing you the best,

K

Freyagoo profile image
Freyagoo in reply to KayHimm

Well they say the "inflammation markers" are high all the time. I ask why. They just say "dunno, maybe that's normal for you."

The blood tests are a mess 100% of the time. I have a high reading on lots of things which on googling have made me freak out that it could be anything up to cancer. (I know I must avoid doctor google but ... you know ... curiosity...)

Usually, the tests come back like this

Lymphocyte - high

Eosinophil - highRed blood cell count - high (this indicates problems breathing mostly)

White cell count - slightly raised

As regards to the "arthritis", it was said not to be; as the wear and tear was not to a degree that it should cause pain and the rheumatologist sent me a letter to "reassure" me that there is nothing wrong with my hands.

I appreciate you talking me through this; I am under the care of a fibromyalgia team, which has blocked me from seeing anyone in neurology since they don't take patients diagnosed with fibromyalgia (I can't figure this out, since trigeminal neuralgia doesn't fall under fibro, nor does the muscular weakness, migraines and balance loss I suffer).

Obviously, I don't want it to be lupus, but I do want them to consider the possibility of everything that deserves investigation. Given that I had a diagnosis of discoid lupus when younger (20 year ago and they made me stand in a uv cubicle to try and desensitive me), I'm really worried by the fact that my doctors now don't even consider the possibility... among other possibilities. They just slapped me with the fibro label pretty fast. They also told me that M.E doesn't cause pain, so... I don't have confidence in them I suppose.

KayHimm profile image
KayHimm in reply to Freyagoo

The best thing is to ask about the high inflammation markers. If it’s ESR or CPR, I would want an explanation. It is fine to Google, just make sure you get questions answered.

As I said, your high white count would not make them think lupus. That would tend to be low. I recently had a low lymphocyte count when in a mild flare.

Do they think you have allergies? Asthma?

Fibromyalgia should be more than “don’t know what is wrong.” The rheumatologist should know how to differentiate. Nearly fifty percent of lupus patients also have fibromyalgia.

If they put you in a cubicle to de-sensitize you when they thought you had discoid lupus, that needs explanation. I think most people here on the forum are told to avoid the sun and de-desensitization like that could cause a major flare.

No one wants a diagnosis of anything but everyone wants to feel better. Many women who have been told they have fibromyalgia come here confused by the extent of their symptoms. I imagine they think if they had lupus or another connective tissue disease, at least they could get treatment. That is what I would I would think. Honestly, I have often said I wonder if long ago I would have been diagnosed with chronic fatigue syndrome had their been such a thing. Fibromyalgia is a disease that is not well understood and for which there is no good treatment. You feel awful with nothing to show for it.

You have to have a doctor you trust. Maybe it is time to think about changing.

Xx

Freyagoo profile image
Freyagoo in reply to KayHimm

20 years ago they had a very different take on everything. My M.E diagnosis came about from "your thyroid is fine therefore you must have M.E".

So I'm not sure what the UV treatment was about in general. Perhaps they just didn't have the knowledge then that they do now.

It took me a long long time to come to terms with M.E and it's lack of... support/understanding. There is a desire underneath all that to just be diagnosed with something different so that you're... believed. I thought I was at peace with that, but the way my symptoms have ramped up in the last year - there's a saying that every new "not normal" should be investigated outside of any current chronic diagnosis.

Thank you for the talk - I feel a bit more at ease now, and I'm sure I need to strong arm my doctor surgery into letting me see someone that will listen to the laundry list of symptoms I have all at once and the increases in severity. The random neuralgia in my face and foot along with some other neurological symptoms (but the neurologists won't see me due to having a fibro diagnosis) has been mildly terrifying, my worst fear is MS and I pray it's not, every day.

demanding answers and explanations for things always made me feel like a bit of a jerk, they're the doctor, not me. But I guess it's time I tried to find a way to feel reasonable asking them for more info.

Thank you xxx

Demanding answers is fine, Those patients who are most proactive with their care, I believe fair better with their conditions in the long term.

To me it is nonsense to trust, just because someone has a certain position and profession - the value of the interaction I want to constantly review...

and over time we pick up so much knowledge - one person working at the GP surgery said I knew more than them when I was 18 months in on referrals. I did not believe what they said - but it said something that yes, I had learnt a lot.

Take care. Hoping things turn around.

Different places I think look at different things. Centres of Excellence or the London Lupus Centre (see their website for how this works) may be able to help with a fuller review and diagnosis. Need to find folk with most experience who are caring. Searching on posts in HealthUnlocked helped me find a Centre and a doctor.

I was diagnosed with UCTD and started on hydroxychloroquine to try to stop symptoms and prevent future organ damage. Symptoms are improving noticeably.

You have my sympathy.Note my diagnosis made in the late 70s aged 17 is Stills Disease which manifests as RA.

I can have joint pain that is very bad but there’s never anything to see.

Stills is rare but has similarities to Lupus hence I benefit from this site.

My point is that I understand you, you’re not alone.

Hi Freyagoo 🤗Welcome to the group!! 💐I'd like to focus a bit on the diagnosis you got 15yrs ago of discoid lupus. If you've already been diagnosed it can't just be forgotten surely?

I was diagnosed with Subacute Cutaneous Lupus (SCLE) in 2017 and I've been on medication ever since then. My form of lupus affects my skin mostly but I'm still on all the major drugs used for Systemic Lupus (SLE). Are you on any meds?

You've come to right place here..there's loads of support n information about living with autoimmune conditions. I've learnt more about lupus here than from any of my doctor's 😹

You have bucket loads going on..no wonder you're exhausted!! Unfortunately conditions like ours do tend to take an average of 6yrs..it was 7yrs in my case so we understand frustration n the non-joining-up of dots etc..everything being treated individually I mean. I would suggest you start keeping a symptom diary if you haven't already. Note everything..what symptoms your experiencing..what you've eaten..what's the weather like..how are you feeling generally. These may seem irrelevant but over time I have started to see n understand more of what triggers off a flare in my particular case. Take pics of any skin involvement or swelling too. Both of these tools help us to communicate with doctors coz we can go through our notes n then ask appropriate questions..we don't get long with docs so I find it helpful to be concise.

Lupus UK is a fabulous site with lots of info n if you scroll down to Eclipse you'll find out loads about photosensitivity. It sounds as if you're having issues with this. Many of us are photosensitive, me included..I have to be very careful with all kinds of lighting.. not just sunshine..indoor lighting too..especially flourescent. Turning lights down on devices can help to reduce facial soreness. Wear sunscreen factor 50+..wide brimmed hat..long sleeve top n trousers even on overcast days. Anyway you'll find all this out if you look at Eclipse.

Please be kind to yourself right now..you're in a dreadful state physically and that takes its toll mentally. Stress will exacerbate your symptoms even more so u have to try to treat yourself kindly. You're here with us now n we will all help you along the rocky road that is lupus (other autoimmune conditions are available😹) This is a fabulous site and we all support each other. We live with these conditions 24/7 so although we're not doctors..we know so much more of how it is living n coping with chronic illness!! You're not alone 🤗and we believe you!! 💜🌈😽😽Xx

In Dr Donald Thomas' The Lupus Encyclopedia' there is a chapter on Fibro myalgia.

I notice on page 409 it says that people with SLE typically DO NOT SAY they 'hurt all over' (unless they have Fibromyalgia). You are not saying you hurt all over but give specific areas possible not aligned to Fibromyalgia

It then says that Lupus arthritis does not tend to affect the neck, muscles of the neck and upper back, buttocks and sides of the hips. If these are hurting Fibromyalgia is more likely the cause. These are not areas you are including.

So if what is happening is the front not the back then turn this around maybe and question the doctor...

Dear Freyagoo - we are allowed to choose a doctor/hospital for another opinion. Why not look up a Rheumatologist who specialises in autoimmune? Then TELL your GP you want a referral - Guys /St Thomas is a good bet and they do the tests all in one go. A fresh pair of eyes ! Most of the docs I have seen over the years are not experts. Also look up Dr Elizabeth Price real expert !,

HelloSo sorry to hear about your situation, I empathise. The only way i got help was by seeing Dr Kaul at London Bridge hospital. Its worth every penny, I don't know where i would be now without him.

If my car broke down/needed repair I would have to find the money. I see it that i need repairing! I get my bloods done with NHS before appointments and take copies to Dr Kaul. All medication he prescribes I get via my GP.

It’s reassuring that if I am unwell he is there, No frustrating referral process, waiting for an eternity for an appointment and then when you finally get there they don't listen, sadly this was my experience with NHS rheumatologists

Look after yourself. Sue x

I must confess I’ve never heard of “desensitisation” to uv light by dermatologists? Is it possible?

Which particular wavelength of uv light?

UVA, B or C and what did the treatment involve?

Most of us lupus sufferers are particularly sensitive to uv light even on cloudy days and have to take care and precautionary measures eg wearing hats, 🕶, sunblock etc but “desensitisation” is a mystery to me other than avoidance of intense sunlight.🧐

Thanks for any info.

Alida_Horne profile image
Alida_HorneAdministrator

Hi Freyagoo

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at:

lupusuk.org.uk/request-info...

I am sorry to hear you are having such a difficult and confusing time. I have added below a link to our blog article regarding getting the most from your medical appointments, which has some tips about how to prepare, to enable you to get what you need from the appointment.

lupusuk.org.uk/getting-the-...

You will also find below links our publications regarding symptoms and diagnosis:

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/wp-content/u...

I hope the above information is helpful, but if I can help further, do please let me know.

Kind regards

Alida

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