I'm new to this forum but reading some of the posts have given me some hope that there is a light at the end of the tunnel.
I'm 44 years old and for the past three years I've been experiencing random illnesses/symptoms almost every day. Two years ago I had Erythema Nodosum on arms/hands, legs/feet which rendered me pretty much housebound for 8 weeks, except for the occasional trip to the doctors/hospital for appts/xrays (ooh exciting!). During this time my Doctor did a full work up of my bloods and concluded that I did not have Lupus and the x-rays did not show any signs of Sarcoidosis and that they couldn't tell me what triggered the attack. The only thing that my bloods did show was inflammation markers, which was no surprise because I looked like a giant sore red balloon.
For the past three years I have also experienced the following symptoms
- chronic fatigue
- Oedema in arms/hands and legs/feet
- joint and muscular pain, which varies in degree of pain and moves around the body from day to day (sometimes hour to hour) with some days pain free.
- localised rash on my shins which appeared in July 2018 when I thought it might help to get some vitamin D on my legs during the heatwave - I normally keep my skin covered in the sun as I have very fair skin and do not react well to sunlight (to much exposure, i.e. 30 mins, can leave me feeling very unwell). The rash will not clear up and just repeatedly scabs over - even though it's not itchy and i'm not picking at it.
- thinning hair near the fringe area (it could be all over but that's the most noticeable section.
- IBS symptoms.
- Increasing frequency of boils and rashes in different parts of my body.
- Increasing frequency of migraines, particularly with olfactory hallucinations (I spent 3 days convinced that my lodger was constantly toasting fruit loaf in the flat the other week!).
The list goes on but it gets tiresome after a while!
I have days where I am convinced I am a hypochondriac. I have days where I feel fully convinced that there is something wrong with me and that the doctors are not listening. I have days where I am sure that I am not communicating my issues with the doctors and it's all my fault I am still struggling to get a diagnosis.
It took my friend to take me to the walk-in centre and the doctor who saw me said I need to go back to my own doctors and tell them I need to see a Rheumatologist - which led me to think that he suspects Lupus. Until then I had no clue what I thought was going wrong. What symptoms could I google? -- it could bring up anything.
My referral went through in December 2018 and I'm now on a 16 - 20 week waiting list to get my appointment. I've made a list of all my symptoms, my current medication and other conditions that I have (Hypothyroidism and Hypertension). I'm wondering if I should take photos of my rashes/boils as they occur - just in case everything magically disappears on the day of my appointment? Any other advice for my rheumatology appointment would be appreciated.
Apologies for spewing everything out above but I'm fed up of moaning in my head and thought it would be safer just getting it out there in the ether. I mostly avoid my friends/family at the moment cos I'm very good at just hiding away when I'm feeling poorly.
Cheers for reading.
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Catchacowboy
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You are not a hypochondriac. Your last blood tests were two years ago. You have new symptoms and clearly not doing well. Do you have Hashimoto’s thyroiditis? That is found to co-exist in many autoimmune patients. Good you have the rheumatology appointment. Don’t hesitate to see your GP if you have new symptoms in the interim. Trust yourself. Keep in touch.
Thanks very much for your lovely reply KayHimm. Hashimoto's thyroiditis is a new one on me - i'll have a look at the symptoms and keep it in mind. Hopefully I'll have a better handle on things once the Rheumatologist has seen me. "Trust yourself" I'll think of your response every time I feel a little crazy. Cheers.
The good thing is your doctors are clearing taking your symptoms seriously. I think the most common cause of hypothyroidism is autoimmune. I am bringing that up because many patients with autoimmune disease have hypothyroidism. We get tested a lot for thyroid problems. The rheumatologist will likely note your hypothyroidism. You might want to ask his opinion about whether this points to autoimmune disease? My thyroiditis was certainly taken as a clue. Feel free to message me. Your presentation is very similar to mine.
Hello I hope you get help when you see the rheumatologist.I had a battle to get a diagnosis which unfortunately took years. but now I have a wonderful rheumatologist and feeling so much better on immunosuppressants.What I found helped the most was taking photos of any rash, or inflammation and keeping a diary of symptoms so the rheumatologist can see them and you remember everything when you get in there.I hope you get a diagnosis and help soon.Jane.
Thanks so much Jane for responding and for the advice. I’m off to get my Polaroid to get some good snaps of my legs (ooh gorgeous, pasty, hairy, rashy numbers haha).
I’ve made a list of all the random symptoms and whatnot.
Can I ask does anyone else suffer with memory issues and brain fog? I’m covering it reasonably well at work but I’m sure someone’s gonna cotton on to the fact that my memories buggered due to the large numbers of post it notes decorating my desk and pc!
Anyway thanks again to all who responded and the advice given. I appreciate that you’ve taken time out to do this.
Hi am so sorry your so unwell. Have you been tested for M.E ( chronic fatigue) and fibromyalgia as I have symptoms similar to you and in the past suffered boils. Try drinking 2-3 litres of mineral water with lemon slices cut out sugar salt and anything artificial as I found it worked for getting rid of the boils. I am sensitive to tap water and you are maybe too. I even had to wash in it for awhile. Keep a diary and keep taking photos with dates. It takes a while to get a diagnosis but you will get there in the end. Get plenty of rest and go back to your Drs and ask for a full medical tell them how unwell you feel. Let us know how you get on. I wish you the best of luck. 😀
Thanks Jeromicus888. I've not been tested for either, as far as I am aware. The doctors appear to be assuming that it's just my hypothroidism and that they are still working on getting my dosage correct. When I present all the additional symptoms they just ignore them. When I showed my leg rash - the doc just said 'I've never seen anything like that. I don't know what it is' and sent me away with base cream. When I asked if Levothyroxine could cause severe joint and muscular pain the doctor said 'no' and then ignored what I had just told her. I'm back at the doctors beginning of March for my blood tests and hopefully my Rheumatologist appointment will come through in April (fingers crossed).
Thanks for responding and the advice, all greatly appreciated.
Hi,
Do you get mouth ulcers at all? The reason I ask is that Erythema Nodosum can be associated with Behcets Syndrome which is one of the rarer auto immune Rheumatic diseases and shares a lot of symptoms with Lupus.
I would take photos of all lesions and it’s a good idea to write out a brief symptom and treatment timeline going back to when you first felt unwell. Type it out and give the Rheumatic a copy. When we have been unwell for a while and have various symptoms it can make taking a proper history in the time allocated challenging!
Thanks for the links Tynemouth - my leg rash definitely looks like vasculitis (after a little google imaging) but of the less severe type (gosh, some of those pictures are terrifying!). I don't really suffer from mouth ulcers but just sometimes get a sore mouth, like when you've eaten food that's too hot. I've started listing all my symptoms but my treatment timeline is practically empty as I've often just been sent away from my doctors with some base cream or a 'I don't know' or they ignore my symptoms completely.
But again, thanks for the advice - you've all been a great help.
This is the place to rant, vent, ask questions and seek support so I'm glad you've made contact..we all understand where you're at at the moment..ie in the diagnostic wilderness!! There r loads of us who understand how frustrating n confusing this whole business is. It took years of me battling with symptoms to finally seek medical help..I wasn't on the internet n have always been of a strong constitution..I was putting many of my symptoms down to my lifestyle at the time n the fact that I was heading towards the menopause.
U have a rheumy appt coming up n I agree with others that it's best to keep a diary of symptoms you've had even if they're not prevalent on the day..take photos of skin involvement..take someone with u if u can because a lot of info is given at these appts n it can be a lot to take in. I write down any questions I want to ask as well because yes memory n brain fog issues are part of living with lupus n once I get in the building prior to appts..I'm thinking about the lighting..where we're going..need the loo etc!!
Lupus UK is a wonderful resource so I would recommend u have a look at the website. U have time before your appt so u can do your own research..ask the most appropriate questions for u..n then u will appear knowledgeable..not hypochondriacal!!!
Thanks Krazykat26 - the tip about taking someone with you to the appointment is brilliant. I keep getting information about my hypothyroidism and my blood tests and as soon as I come out of the appointment I've totally forgotten what they've said (come on, let's be honest, I've forgotten seconds after they've said it!).
Is the light thing a big issue with Lupus sufferers? The lighting in my office is terrible and makes me feel like I've been sat under a sunbed for the whole day or I come home with a terrible headache.
I have a friend who keeps asking if its 'just the menopause'...it's getting harder and harder not to just punch him in the head. I flipped the other week cos he sent me links to the 'menopause' - he caught me on a very fatigued/painful day.
All the above info very much appreciated.
Ps. I am aware that i am slightly oversharing but it's because everyone is so understanding on this forum and it's either that or scream into a pillow (which would look weird cos i'm on lunch at work!).
I have light sensitivity...sunlight n flourescent lights as well..it may be that in the office environment it's affecting u badly. I have to wear a hat indoors when I have any hosp appts or GP surgery etc!! On the lupusuk website there is a place that talks about sensitivity to light called eclipse...it has lots of info and tips about various forms of lighting..I can't go into it here because when I researched it..it kinda blew my mind!!
Don't trust me on this but I think quite a high percentage of people with autoimmune conditions/lupus have light sensitivity..n yessssss it's rash..headache..n general sapping of energy.
Haha when u said friend..I was wondering but then u said he's a man I rolled my eyes n said 'of course's!! HE will know all about it!!!
Keep sharing because it's a good outlet n u don't really want to punch the pillow...punch little letters into your phone n u will get through to someone for sure!! Xx
I kept a diary and took photos of my rashes! It was immensely helpful! When I went I only had the hair thinning and dry skin. My rashes were not visible. I had took pictures and shown him how they appear. My blood tests also supported the things I was saying. He was very interested in my previous illnesses, diagnosis. Such as blood disorders, clotting, miscarriages and pulmory embolisms etc. It irritated me at the time because he seemed so focused on my history. I’ve since learnt that builds the picture of the history of Lupus. I’m now on steroids and see him again in March he has ordered yet more blood tests. The steroids I have been taken for 5 weeks now and I already notice a difference in my symptoms apart from when I am in full flare it has helped reduced swelling to joints, skin rashes and the horrendously dry eyes I was experiencing! Good luck. Hopefully there little tips help. xxx
Thanks so much Angie. The tips are very useful. Do you know what sets off your flares and how long do they last for? I'm assuming it's very different for each person. My symptoms can come and go within hours - particularly the joint and muscular pain.
Good luck with the medication and I hope your symptoms continue to clear as much as they can.
I literally have no idea... I know when I feel stressed or really mad/upset it causes a flare. Also over doing it also causes a flare. Flares can last for me originally anywhere between a few hours (swollen joints) to some days. Now they are lasting about 2/3 weeks. I’m just coming out of one now and that’s been my worst I couldn’t even walk. At the moment I’m just continuing testing the parameters/boundaries. I’m not back at work yet but due back mid March. I know that’s going to make a tremendous difference to my stress and workload and I’ll have to adapt again. Steroids are working but I’m slowly being reduced off and this is causing implications because I can already feel my body beginning to flare. I try not to take too many painkillers (during a flare I’d gladly accept a bat round the head!) but when I’m coming out I feel it helps me gage my body better rather than masking. It’s all learning what is right for you... everyone is different. I’ve found cutting processed foods seems to have been the most effective for me but not too sure why? However saying that at the same time I started steroids so properly just coincidental. Walking helps my moods but not so easy when your feet burn like mad!
Hi try looking up symptoms of lupus, M.E
and fibromyalgia. Tick every symptom you have had then give this to your rheumatologist but I would also see another dr and ask can you have a referral to a neurologist to rule out M.E and fibromyalgia as you have many of the symptoms. Look up both condition as it’s what I did and I eventually got a diagnosis. You are not a hypercondriac it’s what we get labelled with when Drs can’t be bothered to investigate our symptoms or don’t believe us. You need rest and no stress. Keep us updated and get back on this site if you need further advice as everyone is just so supportive and I personally have learnt all sorts. Have a great evening you will get there in the end. 😀
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