Can anybody relate? How long did it take to be di... - LUPUS UK

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Can anybody relate? How long did it take to be diagnosed?

Clauds90 profile image

Hello! I started with chronic fatigue back in June, no other symptoms other than headaches and pain behind my eye. These flare ups kept happening and by July my wrist was in a bandage because it started hurting.

I mainly get the pain on the right side of my body in my arm, wrist, hand (sometimes feels numb) my knuckles (feel swollen but not), my hips (they feel achy) and my right calf goes very tight. I get a tight neck and back. but I wouldn’t say is constant pain, it’s like episodes of up to an hour then stops. A lot of the time it feels like nerve pain. Then the next episode will hurt somewhere else.

My hands have started randomly feeling like they’re burning but they’re not hot to the touch. My feet feel like they’re in ice buckets.

I had a flare up last week and had an episode where I got pins and needles down one side of my body and in my head and down my face. The fatigue leaves me bed bound.

Before each flare by glands swell and I feel like I’m getting the flu.

There are some weeks (rarely) I have no symptoms and my energy levels are not like they ‘used to be’ but I’m able to do everyday tasks. Some days I can’t move off the sofa.

My rheumatologist has said he thinks it could be early lupus or fibromyalgia, but my question is: can anybody relate to these symptoms, does it sound like Lupus? because even the rheumatologist wasn’t sure.

It definitely flares up when I’m anxious or if I feel depressed. No rashes, ana 100, but white blood cell count keeps dipping

Thank you x

18 Replies

Hello 👋 it wouldnt be fair to say its lupus as many auto immune illnesses have similar symptoms and overlap. Its all very complicated and quite often you will find people have more than 1 auto immune illness. For me diagnosis took 5 years which isnt unusual. You will most probably need bloods like ANA and DS-DNA repeated many times to see what's going on.try not to get to down about it is a long journey to diagnosis and treatment plans take months to start to work but you will get there.fatigue wise...pace yourself and sleep as much as possible.naps can help give you a boost for the rest of the day.there is lots of support here so do ask even if you think its trival ....someone will help I'm sure.google the spoon theory 👍.sending welcome hugs and best wishes xx

Thank you! That’s actually really helpful! I was so disappointed when they couldn’t give me a diagnosis but that makes more sense. I have a 13 month old so naps are a luxury 🤪 but I am starting to pace! I check out what you said x

I know its hard when you feel terrible not to get any answers or treatment but you have a rheumatologist who is listening to you so that's a good start.as well as lupus I have 3 other auto immune illness b12 deficiency anaemia ( which can cause pins and needles) hashimoto's (auto immune thyroid ) and sjorgens so it all takes time to fathom it out.if you can nap when your youngster naps maybe but I appreciate it's hard....i have a 15 month old grandson.i set myself a task of the day but I dont beat myself if I dont achieve it but it's a good feeling if I do ....todays task should by dusting 🙄 .I know at the moment it's maybe not possible but there is no shame in either saying no or asking for help.it is possible to get along with AI illness if you compromise and adapt.🤗 xx

Thank you so much for taking the time to reply - you’ve made me feel a lot better and reassured

Hello Clauds90

Some of your symptoms seem very similar to mine ( I have a Lupus diagnosis) but like Spanielmadlady says no-one, other than professionals can say for sure that it is Lupus.

My own ‘journey’ started with an under active thyroid and then following a stressful period, I developed extremely painful joints, particularly in my arms. It was first in the left side and then moved to the right and was so painful that I couldn’t move it to get dressed. Fortunately, I’ve only had a couple of episodes as bad as that one but I do still suffer with joint and muscle pain.

This prompted a rheumatology referral but it took 3 years from then to get a diagnosis.

I had other symptoms too, extreme fatigue and raynauds as well as osteoporosis and CTD. Flu like symptoms happened regularly and I still have periods of ‘flu attacks’, especially when I’m over tired.

My own personal way of coping was, if the symptoms were being addressed then it didn’t really matter what the condition was called. But I understand for some, a diagnosis can answer lots of questions.

It would help to record your symptoms as if you’re anything like me, you’ll forget between appointments!

I hope you find some comfort from the forum here. I don’t post very often but have found the posts an invaluable source of info.

Most of all, be kind to yourself. It’s a process of adaptation and acceptance; easier said than done at times though. Ten years down the line, I still don’t always practise what I preach!

Take care

S x

Clauds90 profile image
Clauds90 in reply to Susieliz39

Thank you for replying and your kind words. It has been comforting finding this forum and helped understand things a little bit better. It has been really helpful discovering that diagnosis isn’t overnight for most people either, I thought I was the exception! Is there anything you’ve found helpful to control flares and how frequently would you have them?

Stress is a major trigger of flares so try to keep a very tight lid on it.learn to not to stress about things you cant change .as susie says be kind to yourself...cut yourself some slack preserve those spoons x

Susieliz39 profile image
Susieliz39 in reply to Clauds90

Hi Clauds

My flares tend to be flu like symptoms and an aching, painful body. I get these when I’m overtired. At these times, I cut my losses and slob on the sofa all weekend so that I’ve got the energy for the next working week 🙄 that took a bit of getting used to ..... all work and no play etc, etc!! But it is what it is and at the min my choice is to continue working.

I have just had my dosage of hydroxychloroquine increased, so will see how I go. I do feel that I’m quite ‘lucky’ with my symptoms though as compared to some, they are much milder.

However, I am well aware that it could change at any time, from reading on this forum, it is such an unpredictable condition.

Take care of yourself

S x

Clauds90 profile image
Clauds90 in reply to Susieliz39

Thank you for replying! I had a bad flare this weekend and I was definitely overtired as my little one decided he wanted to wake up at 5am everyday last week, so that makes a lot sense!

Hi. Autoimmune diseases are very complicated and there is a big overlap of symptoms between some of the conditions. So it takes time and a good consultant to get your diagnosis. Sorry if this sounds negative but it’s best to be realistic about it. Your consultant sounds as though he is heading in the right direction which is good. But there are no definitive tests, it’s a case of looking at blood tests and symptoms and your consultants experience and knowledge will help him to decide.

I think that maybe you should ask your doctor to consider antiphospholipid syndrome (APS) and Sjögren’s syndrome too. There are further blood tests he can do just to make sure it isn’t these. APS often has bad headaches as one of the symptoms along with the usual autoimmune symptoms of fatigue and joint pain. I got pins and needles with it too before treatment. APS can also affect your white blood cell count.

It’s also possible that you have some neuropathy going on to account for the burning and pins and needles and the man who did my nerve testing last week said that this could be from Sjogrens Syndrome, which I also have. (I do also have a ‘lupus-like’ illness, so called because my ANA is normal).

I hope he has tested you for things that can cause fatigue as well as testing for autoimmune conditions. Vitamin D is often low in patients with AI diseases and B12 too. Sometimes anaemia can be a problem.

But also try not to get stressed and try to rest, which is probably a stupid thing to say to a mother with a 13 month old child. It’s a difficult time for you, waiting and not knowing is not easy. I hope you get some answers soon. Xx

Clauds90 profile image
Clauds90 in reply to Jumper99

That’s really helpful! Thank you for sharing. I’m writing all these down to take to my next appointment x

Hi Clauds. I can relate to your desire for a diagnosis and a prognosis, especially important for you with a baby to care for. I was “ fortunate” to get a Lupus diagnosis within a few months of a very acute period but in hindsight I had been suffering odd health problems for years..falls, lack of balance, fatigue, gut problems, pain, rashes. I was quite devastated by the diagnosis as I had never heard of Lupus. More AI conditions were diagnosed APS, Pernicious anaemia, Raynauds, query Bechets. I felt as if I was in a living hell to be honest. Then a Rheumatologist decided I did not have any of these things and took me off all my medication diagnosing Fibromyalgia. Of course I got very sick again and got a new diagnosis of Low Grade Lymphoma. I was given a life expectancy of four years. Something did not add up so I requested a referral to St Thomas’s Lupus Unit. They diagnosed SLE, I had another CT scan three months later and was discharged from Oncology and Haematology. Since that time I have had four Rheumatologists, three of whom dispute the Lupus diagnosis. I have had diagnoses of UCTD, MCTD, Fibromyalgia, Bechets and my least favourite “ hysteria”. I have yet another Rheumatologist who I have not met but seems interested and caring which is a huge positive step. My advice to you is to document and photograph every strange, painful, debilitating symptom you get. Keep a symptom diary, however daunting. That way your Rheumatologist can see how frequently you get symptoms and how they affect you. Get copies of all your blood results from your GP surgery. GP’s often miss details that the labs flag up and when you see your Rheumatologist he or she will not have the time to track anything but your last set of lab results. I know it must be very hard when you have a little one to care for but rest and sleep when they do and be kind to yourself. This AI diagnosis is a marathon and not a sprint. This group is fabulous and give the very best advice, support and laughs along your journey. Take care xx

Hysteria??? That is just awful Cecily. As if someone with ill health doesn’t have enough to contend with and I think you sound like you’ve had more than your fair share.

Take care of yourself. X

Yes it actually shocked me silly. I came out thinking if my head is making me ill I need a psychiatrist. Thank goodness my GP was horrified xx

Thank you for sharing your story, your journey sounds so tough! My greatest fear is someone telling me it’s hysteria, that must have been so hard when you know something is wrong! Thank you for the advice, I’m so thankful I can’t across thos forum - I was in a really bad place but these messages have really helped me xxx

That is good to hear Clauds. I can honestly say that most of us here have despaired at times but we genuinely support one another and although our journeys are all different there are some common themes. I have not found any other place where I get so much out of being a part of. Regardless of the exact diagnosis we are impacted by these conditions to varying degrees and all need support. Keep your chin up and keep logging symptoms and identifying triggers where possible. You are definitely not alone. Take care xxx

Hi

I can really relate to your problems through my daughter.

9 years she has been trying to get a diagnosis- having various symptoms ranging from chronic pain, fatigue, numbness, pins and needles, severe migraines- the list goes on. She had Meningitis on her 30th birthday, suffered a TIA and reached a point where it was so difficult to walk, through lack of energy and painful joints. She has had every test under the sun over the years - nothing ever conclusive . Growing up, she always seemed to have something ‘wrong ‘ she was at the stage where she thought it was all in her mind. However - I recognised these symptoms all too well - I have had Lupus since I gave birth in 1978 to her sister, (I’m now 69) but didn’t get a diagnosis until 1999. A long history of varying symptoms, back in the day that Drs didn’t really think it was worth investigating , as really there wasn’t much information about Lupus. A missed report from a Dermatologist came to light 10 years later by my new GP, which started the ball rolling. However, the rest is history for me, but for my daughter it’s been taking over her life. Obviously she was a mirror image of myself and as the years went by I tried so hard for her to get help, but there was many different symptoms also. I encouraged her to keep appts and told her that her Consultant/GP had a duty of care to get to the bottom of what was going on with her. At last a Rheumatologist who took her seriously - last month she had a diagnosis of Fibromyalgia- that was where some of her symptoms differed. He is not ruling out Lupus and is monitoring her very closely. The two diseases overlap very much. She is now trying new medication to help with pain, but still waiting for nerve conduction tests and MRI etc etc. I know I’ve gone on a bit - but my point is, don’t give up. Even if your Consultant is puzzled, insist on another opinion, until you get the help you need. It’s not nice the symptoms you are experiencing and there are a lot of us that sympathise and experience the same. Good luck to you in finding an answer. Take care

My heart goes out to you both! I spent my 30th in tears not understanding what was happening to my body, albeit meningitis is much much worse. My symptoms started after the birth of my son, although looking back I did have weird symptoms that probably started 2 years previous. I’m also waiting for mri and I’ve just been referred to a pain clinic, i didn’t know they existed until my therapist mentioned it! Is there anything similar your daughter can go to? I really hope she gets relief soon. The part I’ve found the hardest is adapting to my ‘new life’. We’ll get there xx

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