This is my first time posting on here so hope I do not do anything wrong or upset anyone!!
This might end up as being a long old rant and I will apologise in advance for doing so.
I won't go into detail of all my ailments just the ones I think maybe relevant to lupus. Feel free to ask me anything about anything, I don't mind sharing my rather long and painful medical history!
About 5 years ago I started to notice my joints were painful and very achy. Not at any specific time of day but I did notice it more when I was overly tired. I also noticed a slight rash across my nose and cheeks which came out of nowhere. A sudden inability to stay out in the sunlight for more than an hour plus strange little blister like spots would appear on my legs, arms and torso.
I have always suffered from migraines since I was 14 but these suddenly increased to 1 or 2 a month. Then the sore throats, swollen glands and random muscle cramps started along with an intense dislike of anything bright and noisy.
Flu like symptoms followed as well as a tiredness that bordered on complete physical and mental exhaustion. Concentration then became non existent and forgetting what I went into a room for along with the inability to name objects even though I knew what a pen was I couldn't say what it was.
Pain in my hands and feet along with the changing seasons or if I was holding anything cold was an easy thing for my gp to diagnose as raynauds.
I am still to this day feeling all of the above symptoms in some degree. I have good days where I feel almost 'normal' and days where I cry because it hurts to open my eyes in the morning, assuming I have actually managed to sleep in the first place that is!
The problem that I and my gp have faced is that this is not the only health problem I have had going on so trying to get to the bottom of it has been a blooming nightmare.
My last lot of bloods came back as high crp levels, 40 something I think, anemic, nothing new there, but everything else was ok. Can't remember all that my gp tested for but I know that my last test for lupus was negative but I felt ok when that one was done.
I am under 3 different consultants for various things and they all say the same thing when I give them my long list of symptoms......
That isn't anything to do with what I am treating you for, tell your gp or one of the other consultants.
Sorry for going on or sounding like I am complaining. I do not like to moan and complain as I know there are people who have it was worse than I do but a person can only take so much!! I just want a medical professional to say to me this what you could have and this is what the plan of action is and we can try this or this. Being given a diagnosis would be nice but just being able to manage my symptoms would be perfectly ok as well!
Really really tired now so going to lay down on my new memory foam mattress!!
Thank you for reading you deserve a gold star if you got to this part!!
I can't imagine what you are going through right now. Ive also experienced continuous up and downs through my flares that make me wanna give up and just shut down in my room from the world around me.
Even not long time ago, I've posted here how fed up i was about living with lupus - and now I'm cycling, doing my hot yoga, back to my university assessments and to my part time job!
I've learned that all diseases are cycle ....and i know that everything atm seems impossible to manage and to take in, but it will get better!! just keep fighting, get some rest and work with your doctor to get the right treatment.
Be kind to yourself and take things easy when you need to. xxxxx
Hey, Clara! That was a really interesting point: diseases are a cycle! Could you provide us with some more details from experiencing a flare to cycling and doing hot yoga? it will encourage us all!
Its really true - diseases are a cycle, very similar with life, in my opinion. My flares can come across to me very devastating - symptoms of hair lost, severe joint pain and swelling, unable to stand up for too long, unable to manage working hours, memory loss, weight gain, severe acned skin, photosensitivity, intense and prolonged migraines, insomnia, fatigue, lethargy, etc. And these situations come quickly, all in once and in higher levels. Im still trying to cope with them (still haven't learned)...and I've been with lupus for 15 years. When i have a flare i get socially isolated and i just want to disappear (to a black hole)...i rest as much as i can, cry a lot, read things in this blog, and try to get my rheumy ou CNS to review me asap. When things get better i start to keep myself active again...doing things that make me happy (slowly), walks around the house (then to the park and back), then cycling everywhere in london. I discovered hot yoga recently, but im gentle with myself and just do what my body allows me that day. I try to be positive and have my room full of positive reinforcements in my walls and videos on my computer with things like "you can do it". I do meditation everyday, where i take time to appreciate what I've accomplished in life. Although i don't have a lot of friends, i try to catch up with them whenever i can.
Im trying to build a life where i have a calm and positive environment full of things that i like and people that i love.
My aim is not fighting lupus, its embrace lupus and make it part of my daily life!
not very sure if this helps anyone, but this has been the way of me!
Welcome to this community, you will gain great benefit from reading how your not alone in your illness battles. I am sorry your going through it at the moment. Fatigue is one of the hardest symptoms to cope with and I'm wondering is your anaemia being treated?. Also raised CRP usually means an infection for us Lupies as otherwise it can stay stubbornly normal despite inflammation going on. How long has that been going on and if you have an infection that is going to make you feel very tired and unwell. I've found having three Consultants like you can be a nightmare as it's easy for them to pass the buck and not make any treatment decisions!. It sounds like this is happening to you!. I'm afraid it can be a long battle to treatment and diagnosis , it has for me, but you will get there if you don't give up and keep posting on here. X
I have Ulcerative Colitis which is why my crp is raised.
My anemia is treated by cosmofer infusions as I don't tolerate iron tablets at all. They are ok for a while but they unfortunately don't last very long.
I have UC too, how do you find it?. I am fortunate mine is mild but I hate having it and have had to go on to iron tablets permanently for it!. How are those infusions?. Interesting there is an alternative to iron tablets. I must admit I did think Lupus was enough to deal with without U.C, bet you did too?. I think it's quite rare to have these conditions together!. I hope you feel less tired soon. I do find the fatigue can get me down!. X
My U.C came first. It was possibly misdiagnosed as ibs as a teenager but didn't really give me any problems until 6ish years ago. Mine was very aggressive and wouldn't respond to any of the meds. Ended up having my colon removed 3 1/2 years ago as I was at the point of not being able to keep food or drink in my system for long enough to get any benefit from it.
I now have a stoma and only a small rectal stump. Best decision ever, not that it was much of a decision mind!!
The infusions are the best thing ever! They really are. You have to go in hospital for the day as they need to give you the infusion quite slowly. The next day you feel rough as all get out but as your body absorbs it you start to feel so much better! I am kind of hoping I am really anemic again so they will give me another one!
I agree that the whole fatigue thing can get hold really fast. I think I would be able to deal with most of the other stuff but it's the whole can't move because you are so tired it's painful! I don't think anyone who has not suffered this side of it will ever understand how debilitating it really is.
I read your earlier posts and I'm sorry you've had so many problems with your health!. Makes me grateful!. Do you belong to Devon Lupus Group as you live in Plymouth?. Who is your Rheumy?. I used to go to Derriford Hospital and saw Dr Robertson as I live in Barnstaple. I miss her but like you can't travel!. Small world isn't it?. I so agree with you about the fatigue, doctors don't understand it , you have to experience it for yourself!. X
Rheumy won't see me because on the only time I was tested my bloods came back normal so didn't even get in the door!
Have not been diagnosed with anything except U.C officially so not really joined anything except this forum.
Although I wouldn't wish this on anyone I would like for all the people who belittle us who suffer to have just a day in our shoes! Would shut them the heck up!!
Not just doctors but I have had some horrid comments from supposed friends and family as well. Most of them I don't see anymore but I had enough to deal with without all the negativity that they would bring with them!
in 2002 i started having Migraines and had them nearly every three days fortunately now i rarely get them but still get headaches i'm not sure whether that was the start of what was to come as i did feel tired a lot but i put it down to work pressures, my rash started on my face, i was in the garden last year and had noticed a rash under my eye, it was a hot sunny day, then a few weeks later my arms were covered in rashes, then is just exploded all over my torso, my GP thought i was sensitive to grass as it got worse when i went on Holiday down south how he came to that conclusion is beyond me!.
I am going through the menopause, so this could be another factor, not quite sure?
it took a year for them to diagnose SLE, i count myself lucky as the rash is mainly on my arms,legs and little on my face and i am taking Plaquenil and Mepacrine and my skin has calmed down.
The rash on my face isn't too noticable but it does give me a 'healthy' glow! This makes it so hard to be taken seriously as I get the usual comment of - well you look well!
It does make me laugh some of the things the docs say!
Just fyi, i ve read some research suggesting that symptoms are decreasing after menopause because lupus activity is related to some hormones. I wish the same happens in your case. Good luck!
It's tricky when more than one consultant is dealing with you,as you've said they all pass the buck with that's not my field.....you don't say which consultants you are seeing? Rheumatology seems to be the department that deals with auto immune diseases and gathers all the info together. What have the gp or consultants come up with and what medications are you taking?
You could discuss and ask the gp to try hydroxchlorquine which is the one that the majority take or prednisol. They're not miracle cures but do help some of us keep the symptoms down and only have flares on and off.
For me tiredness is the worst bit, I can get through the aches and pains but never the fatigue, if my eyes want to close, they close and that's it!
Whilst you say there are others worse of than you and probably true. It doesn't help you! And there's nothing wrong in a moan, that in itself makes us feel better especially with others that understand, that's what we all do from time to time.
I am under urology and gynecology because I keep having uti and kidney infections. This started last year and I am now in low dose antibiotics to stop them. So far it's working! Yay!!!
I also had a cyst on my left ovary that burst and then my right ovary decided to have a bleed. That was the most painful thing I have ever had in my life!! Could not move for 2 days and it hurt to even blink!
I am under gastroenterology because I have Ulcerative Colitis. I have only got a small stump left of my colon as I had to have it removed and have now got a stoma.
And lastly I am under haematology because I have the uncanny ability to form blood clots at any time. I have had 8 pulmonary emboli and 4 dvts. Currently have a filter in my aorta which stops the big clots getting to my lungs but nothing stops the other ones from forming. Am on blood thinners to try to help them stop.
My gp tried getting me a referral to rheumatology but they looked at my test results and said I didn't need to. So couldn't even get in the door!! Will try again because the symptoms are still the same if not worse.
Cannot tolerate most meds. Steroids being one of them. I have an appointment with my gp in a few weeks so I can badger him again.
It just seems never ending some days and pain is all I can think of. My family do try to support me - some of them anyway- but it can be hard to find the words to explain how I feel sometimes.
I do try to stay positive because I think it does help plus wallowing in self pity has never been my style and it does me no good whatsoever! But also a good moan is good for me as well!
You don't have many problems then......lol my goodness I think you have your fair share of things to deal with! You're right it doesn't help to always have self pity but sometimes everything just gets on top of us and need to have a good grumble.
For what it's worth, my thinking is go with the aches and pains for rhuemy to see if you have developed arthritis. but also if your blood likes to clot, this could be the problem I'm not an expert and maybe someone else who knows will jump in with the answer, Ives got sticky blood/Hughes syndrome which seems to go with some of the auto immune problems.
I can't get a definite diagnosis from haematology as they need a 'clean' blood sample. This means no blood thinners in my system for 24 hours. As I clot with blood thinners if inactive for more than 18 hours - we did an unofficial experiment - they won't risk me being uneducated for the amount of time needed. In all fairness it won't affect the treatment I receive but it's not always about that.
I have children that I worry about passing things onto. This worry was shot down when I brought it up recently as they are boys! So boys don't clot?!
My joints are painful but there is no swelling or redness which I am told by my gp would be present if arthritis was present. I have always suffered joint pain. It's funny how when you look back over your life and you actually see how much pain/discomfort you were in its like a lightbulb moment! I have always suffered from joint pain since I was a teenager but then it was brushed off as growing pains, then as I got older it was because I had recently had a cold or it was a virus!
It does feel good to know I can come on here and have a rant and a moan and not be told to suck it up, or that I look ok so there can't be that much wrong with me!
I found out me and my children had Hypermobility syndrome through my eldest grand daughter after she at 3yrs had a collapsed lung twice! I was in my late 40s at the time, it was only her consultant who kept saying about her double jointedness that I twiged and asked if it was connected to her lung collapsing and that's when everything fell into place for the rest of us who had always had various problems. I had to have pancreatis twice before the professionals realised I had lupus and sjogrens and this probably goes back years.
It's been an interesting journey finding out how all the family history has come together.
I don't always write on this site, it is good knowing we are not alone and no one judges you. X
I have been diagnosed with many auto-immune illnesses plus... I have APS, Hughes Syndrome), for a blood clotting disorder, ANA positive for Lupus, and have had my fair share of flares..remembering back to teen years I had problems with going out in the sun, rashes and blisters within minutes..etc, severe pain when taking deep breaths for a while, my mother thought it was just an excuse for not wanting to go to school. Found out years later that it probably was a blood clot because my left lung had scaring, Multiple Sclerosis, Now Behchets Syndrome. It seems as though when we have one auto-immune illness others are also lurking in our bodies. Don't give up, keep searching for answers. There has got to be someone out there that can finally give you the answers you need to help. Good luck as it takes so long sometimes to get diagnosed and treated correctly. xxx
It does seem as if once you have one, I have Ulcerative Colitis and some sort of blood disorder, it does pave the way for more.
I was asking my mum if I was seemingly more poorly as a child. She said she had to fight tooth and nail to get me seen by a consultant as I had recurrent tonsillitis, ear infections and horrendous nose bleeds that would last for 20-30 minutes at a time. Then I hit my teenage years and the earlier illnesses seemed to reverse only to be replaced by other ones. My migraines started along with the joy of horrid heavy and painful periods - ah the joys of being a girl! Then I got told I had ibs - which I now know was a misdiagnosis of Ulcerative Colitis. Then the sore joints started, growing pains!, and then when I didn't get anywhere myself I admit I kind of gave up and tried my best to get on with my life has best as I could.
I don't do regrets of any kind - I believe what is done is done - but if do wish I had fought harder back then.
My daughter also has Ulcerative Collitis, she was the youngest girl in Massachusetts to be diagnosed with it at not quite 10 years of age. She also suffered horribly from "growing pains" as a child. She is now seeking a full evaluation on her medical issues.
So sorry I have most of the same symptoms. I'm about to medically retire. I'm fed up not being able to do normal every day stuff. The sun makes me feel ill. I'd had extreme fatigue for years and people saw me as lazy. I had lupus seizure and was treated for epilepsy or ten years which put 5 stone in weight on me. My skin had years of problems and for several years I was treated for rosacea which made things worse. 2007 I got the lupus diagnosis. Meds now help somewhat, although I still have bad flares. Rheumatologist doesn't want to know about symptoms that don't affect joints. Always a bit of a battle. Don't give up. Bath hospital for rheumatic diseases or St Thomas Hospital in London specialise, ask GP for a referral. Goig luck xx
I live in Plymouth and can't really travel very far. I wont give up on trying to get answers locally and if it comes down to it I will travel if I need to.
It just feels never ending some days!
Am going to start keeping a symptoms diary and give it to all of my consultants and my gp each time I see them. Hoping that if I badger them enough and make them see I am not going anywhere they will actually do something! Got nothing to loose!
The neurologist I saw would like me on Keppra for the rest of my life. He ignored the fact that the seizure was caused by low blood salt. He was exceptionally obnoxious, more full of himself, and autocratic than any I have seen in my long history of dealing with doctors. When his staff handed me an exact replica of the "causes of seizures" that I had been handed before, I told myself enough is enough. I don't need to pay a man to be insulted. He had also given me ridiculous exercises to do. ( I have serious shoulder issues due to AVN, osteoarthritis). I have not taken Keppra for quite some time, no seizures. My salt levels remain stable which explains the no seizures. Lots of luck for the future lupie46.
I know what you mean about the diagnosis bit. I was terrified when I was going through the stuff with my Ulcerative Colitis but when they told me for definite what it was it was a relief as well. Almost like if you know it's name it looses power over you?!
Whereabouts in Cornwall are you? My hubby comes from St Austell.
My friend who also has lupus said that she had an awful flare-up when she bought a new memory foam mattress - she had to air it for two weeks before she could sleep on it. She is very in-tune with what causes her flares, so just thought I would mention it.
I can see where she is coming from. I needed a new mattress desperately as the one I had just wasn't comfortable at all. I did sleep ok a bit better even though I am in a flare up of whatever this is!
It does feel better as it seems to cradle me as I lay down.
has your family doctor not suggested sleep apnea, I was falling asleep and so tired all the time, so my doctor sent me to the sleep clinic, you stay the night and have all those wires connected to your head, ankles, and chest, and they watch over you with video cameras and infra red so even in the dark they can see you, they assess you and give you a machine and mask, but it really works, I am starting to stay awake and have little walks, good luck on getting sorted out. take care. Davey...
Thank you for replying Davey.
I don't fall asleep during the day at all. It's more of a physical tiredness in my body but my mind is still racing away. I don't tend to sleep much at all. Generally lucky if I get 2-3 hours a night for about a month then 6-7 hours a night for about a week. Been this way for the last 22 years.
I 'rest' a lot but don't necessarily 'sleep' a lot. Does that make sense?
There were some advantages to having the GP in the small town. He did not define himself as narrowly as physicians do now. With all the advances in medicine, I would imagine that he would miss a fair number of diagnoses. No one could keep all that in their head.
That being said, I believe that MDs hide behind their specialty designation to avoid making difficult decisions. Refer, refer, refer. The hip bone is connected to the shin bone and so on. If I have a headache, more than my head becomes problematic.
It would be better if doctors were required to do case conferences on these diseases that cross systems. I rarely hear of a doctor meeting with other doctors for a case conference.
I do get what you mean! My haematology consultant gets frustrated with the others because he needs them to copy him in on the letters he writes to inform my gp of what is happening.
The first gastro consultant was so obnoxious I only saw him once and as soon as I came out of his office I requested a second opinion and a consultant who actually gave a sh#t about the patient sat in front of him. The one I have now, number 3!, is much better and is slowly getting the idea that my world does not revolve around him!
The gynae consultant is ok but needs constant reminders to actually write to my gp let alone anyone else.
My gp will copy letters written to him to my haematology consultant but he shouldn't have to.
I do find consultants very clique! Like it's an offence to associate with a different medical person who specialises in something different. They new and upcoming junior docs I have met have been a breath of fresh air so maybe there is hope!!
There may be hope if the junior docs don't get too influenced by the senior docs. In the states, they are working towards medical records being accessible to any physician who would choose to look. Right now, even computer systems with the same name don't talk to each other. They store information in different "towers". This is per my rheumatologist.
You can ask for a Rheumy second opinion because a lot of the symptoms you describe could be Lupus or another auto- immune illness. I've had negative bloods for years like a lot of people on this forum but we've had our symptoms treated because we've found the right Rheumy Consultant. Dr Robertson at Derriford is just the kind of Rheumy for you. Worth thinking about !. X
Hi everyone.
I hope you are all feeling fabulous.
I thought I would give you an update. I have an appointment with my gp on Thursday and it cannot come soon enough.
Still feeling just as tired and achy and just generally ugh.
Have started having really bad pain in my left hand. I have not been diagnosed but I know I have raynauds due to the obvious symptoms. On Thursday I was trying to peel some carrots for tea and my whole hand went into spasm! It was the weirdest and quite painful thing. My whole hand up to just past my wrist went pure white and I my fingers almost locked in place. I put my hand in the warm dish water and after about 10 minutes was able to move my fingers again.
It has always been difficult to handle things that are cold, like veg/chicken breasts straight from the fridge but I had never had this before. Today I cannot make a fist or straighten out my hand at all and my skin feels very tight. My wrist is also really painful.
I don't know what's going on but I am writing it all down and keeping a list of symptoms and such.
Thank you for all the positive feedback I have received on my post above. It is nice to know there are people who get where I am coming from!
you don't sound like a moany thing at all. I know what you mean. I know people have it a lot worse than me too, but I still just get so fed up with never feeling well. Everyday there's something isn't there. Personally it helps me to read other people's rants and know im not alone in feeling this way. Chin up and nice to hear from you. I have trouble finding out exactly what the diagnosis is to. It's a long frustrating process isn't it. I don't really think the medical profession understand it as I can never get any clear answears. Have mostly gathered all my information from the Internet.
It does seem never ending some days! I still don't feel 'right' but am going to see my gp on Thursday so fingers crossed he will be able to do something. Have taken a photo of my poor hand to show him as well as a nice long list of symptoms!
I do feel like screaming at people some times when you say you don't want to do something because you don't feel well and you get the - well you look ok?!- so I must be faking it then?
Last night I woke up shaking and shivering couldn't get warm at all. My head was pounding and felt so nauseous I did wonder if I was going to be sick right then and there! Thankfully I wasn't!
Spent most of this morning picking up after the blooming storm that swept through here last night and now I feel so tired I could cry!
Having a movie night with my youngest son whilst the hubby and eldest are out doing man bonding!
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I have most of the same symptoms. I'm about to medically retire. I'm fed up not being able to do normal every day stuff. The sun makes me feel ill. I'd had extreme fatigue for years and people saw me as lazy. I had lupus seizure and was treated for epilepsy or ten years which put 5 stone in weight on me. My skin had years of problems and for several years I was treated for rosacea which made things worse. 2007 I got the lupus diagnosis. Meds now help somewhat, although I still have bad flares. Rheumatologist doesn't want to know about symptoms that don't affect joints. Always a bit of a battle. Don't give up. Bath hospital for rheumatic diseases or St Thomas Hospital in London specialise, ask GP for a referral. Goig luck xx
Migraines and so so tired 
Excruciatingly tired!
Too tired for exercise?
(Very) swollen neck gland
feeling a bit overwhelmed and lost
