Utter despair!

I'm sorry this is a very long first post!

For the last 4 years I have been ill – my initial symptoms were feeling very tired and cold (mainly my feet and hands), a little breathless and headaches. I had some blood tests including thyroid and all was fine. My symptoms progressed and I had foot/ankle/lower leg, hand/wrist/eyes swelling and throbbing along with chest pain. My G.P then sent me for a chest scan – again all fine apart from a shadow over my heart which the consultant thought was my breast.

My symptoms where getting worse- I felt like a zombie most of the time constantly tired even though I was getting plenty of sleep. I couldn’t stand for any length of time and just walking about was a struggle. I had constant headaches and the pain behind my eyes was becoming unbearable and my vision deteriorated. My memory was shocking I couldn’t retain any information and had difficulty recalling basic words. Everyday tasks such as washing and drying my hair was exhausting. I then developed a rash on my face that would come and go which was made worse during sunlight and my mouth and eyes were very dry, I would wake up during the night to get water as my mouth was that dry.

Last summer my symptoms where really bad, I really do not know how I was functioning never mind holding down a job. I would go to work bumble about come home and go straight to bed, the weekends consisted of me sleeping most of the time. I had no quality of life what so ever. Last November was a bit of a turning point. I became very breathless with aching in my chest and ended up in A&E, this decision I do not take lightly as I work for the NHS. I had a chest x-ray which showed a small amount of fluid around the lungs but “nothing of concern”; My blood pressure was elevated. I had to take 9 weeks off work and felt truly shocking. The pain/throbbing in my feet/ankles/lower legs/ hands/wrist was terrible and I still had the chest pain/breathlessness. After I had been on the sick for a number of weeks sat doing nothing my G.P organised for me to have a 24hr B.P. check, unsurprisingly this was now fine. 5 weeks after that I had an echo cardiogram and lung function tests which came back fine.

My G.P.didn’t really know what to do and washed his hands of me by offering me anti-depressants! Yes I was fed-up I had been living through this hell for a number of years and getting nowhere but I was not depressed. I decided to go back to work in January this year as I thought some kind of normality might help, I did have to buy new shoes/clothes as my foot size had increased by one size and also my upper abdomen has swollen.

Within a day of being back I knew I couldn’t function as I was so tired and in pain. I was on a fazed return for 8 weeks which meant on my days off I slept and at least that way I could get through the next day at work. I manged to get to March and took 2 weeks annual leave to rest. I had figured a way to try and survive this by not overdoing anything and getting plenty of rest, I knew the consequences of overdoing it was me wiped out the next day, when I say overdoing it I mean maybe having more than one meeting in my day! My memory problems are a constant embarrassment and to be perfectly honest I feel a fraud at work as I now do as little as possible just to get through the day.

I had organised and paid for a private brain ecg for the headaches and memory problems – which again was fine but the consultant after listening to my symptoms suggested I saw a rheumatologist. I discussed this with my G.P.who agreed to a referral, whilst there I picked up some blood results from reception that had been there from October of the previous year! I looked over them and it stated that I had a positive ANA, I researched this which took me to St Thomas Lupus Trust, I emailed the Lupus nurse for advice, she suggested more tests and a referral to a specialist Lupus rheumatologist.

During my wait for my appointment (5months) I had some routine blood test in July, I rang for the results and was informed all ok.

By Late August I was really struggling and decided I needed to see my G.P. again, I managed to book 2 weeks annual leave from work at short notice as I really didn’t want to take sick time again.

I picked up a print out of my July blood tests (The ones I was told were ok) from reception whilst making my appointment. To my amazement there were advisories on 3 of the results for me to see my G.P. One of them was my Creatinine/GFR - 92 umol/l and 57 ml/min

My TSH was also now positive and cholesterol elevated

My G.P. did not seem concerned with the GFR result and informed me that within the last year my GFR had gone down steadily from over 90, he even showed me a graph! Everything I read suggested this was not normal and in particular as I had not been well. He took another test which again was low around 67 and he was happy with that even though it clearly wasn’t steady and fluctuating. He suggested I mentioned this when I had my rheumatology appointment, I presumed he would send the latest results on, he didn’t.

During my period of waiting and length of time I have been ill I’ve noticed a pattern/cycle –

My background symptoms;

Tiredness/fatigue

Throbbing swelling – feet/ankles/wrists/hands/eyes and now knees and elbows

Headache

Memory problems

Dry eyes – mouth

Right sided flank pain (Dull ache)

No strength/weak

Cold hands/feet

These symptoms are made worse if I get stressed, if I’ve been in the sun or if I’ve done anything strenuous plus I get these added symptoms;

Facial rash

Chest pain/lung pain- made worse on movement breathing.

Deep pain in my joints, feels like bruises in my bones.

For your information before I started with my symptoms I was a physically fit very strong 43yr old female, one of my hobbies was renovating properties which included me knocking walls down and general building work, I can’t even pick a paint brush up now never mind a sledge hammer.

My 1st Rhuematology appointment was on Wednesday, as you can imagine I was very nervous regarding this as I had waited so long. I had also been off work for 3 weeks so was feeling better than usual.

I tried my best to explain all of the above to D.R. Helen and what had been happening and my symptoms etc., I was aware that I was I wasn't making very much sense, I tried to concentrate and keep focused. She asked me a couple of questions prodded my feet/ankles/wrists/knees and asked if I had pain, I had already stated that at the moment I had no pain, (other than my left elbow as I had been lifting my baby granddaughter) but throbbing/swelling, she commented how cold my hands were. During this examination I was fully dressed (jeans) including my socks on.

I advise her that both my Mum and Grandma had Rheumatoid arthritis and that my youngest daughter was being tested for it.

She then went out of the room and came back in with another D.R. I don’t remember his name.

In a nutshell he said I didn’t have Lupus or a Connective Tissue Disease, I was shocked that he could reach a diagnosis so soon. I asked him how he reached that conclusion and he mentioned the lupus criteria, which I’m aware of, he said that because I had pain in one area and that I didn’t have cold hands feet. I looked at Helen who said my hands were cold and I stated that I didn’t have pain on just one side, my constant headache, confusion and fatigue, throbbing/swelling, dry eyes mouth, positive ANA seemed not to be taken into account. He suggested I was going through the change; I reminded him I had been going through this for 4 years, he seemed to think that was OK and that as I wasn’t losing weight it couldn’t be serious.

He made me feel stupid and a hypochondriac just like my G.P.

He agreed to run some more blood tests; I presume these will come back negative as they didn’t see me at my worse and I’m sure they will then discharge me.

I came out of the room absolutely shell shocked, I sat in a corner and cried, I suppose in a way I had hoped for something because anything is better than nothing.

I feel I have nowhere to go now; I’ve had every test possible and even with positive results they seem to be unimportant.

My G.P.s insistence of depression has now become my reality!

13 Replies

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  • I'm so sorry to hear that you've had to endure all this.

    I myself have aps, raynauds, sjogrens, vasculitis and my rheumy believes a lupus like syndrome as my bloods remain negative but she feels one day they will turn positive.

    It took almost 2 years of endless gp and consultant appts many of which were dismissive and like you wanted to give me anti depressants.

    Even with abnormal bloods and clinical events I was laughed out of the neurologists office.

    Then I met my amazing rheumatologist who literally changed my life. I'm now on warfarin and hydroxy amongst other things.

    I'm not sure where you are located but perhaps one of us could reccomend a good consultant that you could get your gp to refer you to for a second opinion.

    The other thing is to take someone with you to appointments. This helps me hugely especially when I'm having a foggy day.

    Keep at it, a lot of us have been there on the road diagnosis. You're not going crazy and not imagining things.

    Sending you hugs and strength x

  • Thank you for your encouragement and support.x

  • Hi caleie67, with all of the detailed symptoms you've listed I thought you had Lupus. I have SLE & went thru similar health issues but at that point I'd already been diagnosed as having Lupus. Pls don't give up hope, if you feel that you're not getting support from your current GPs, maybe it's time to find another. Sadly, there are so many autoimmune diseases now that it does take a lot of testing & patience. I go to St Thomas Lupus trust & feel that the consultants could've advised you of next steps to take. Have you had your Thyroid tested? Researching other autoimmune diseases will help you to identify similar symptoms in them & request referrals from your GP. I pray you have support from loved ones. Pls keep us posted x

  • Thank you for your advice and support.x

  • Oh my goodness! Your story sounds so similar to mine. Like you after years of suffering there were markers on some of my blood results including ANA but it was brushed off. They said that my symptoms didn't point to anything but when I saw the rheumatologist I had forgotten my notes and was in a brain fog! He discharged me.

    I wonder if you could do the same as me? I am saving to see a private doctor in London as I am fed up with being told "Your blood results are normal" all the time and abnormal results being ignored. I have given up with my GPs now. I had a lovely GP who suggested I may have SLE but before she could refer me again she was ill and subsequently left the practice. The remaining GPs are useless. I could change surgeries but I am worried I am jumping out of the frying pan into the fire!!

    I do hope you get some help very soon for the awful time you are having,

    Maggie

  • Thank you for your reply and I hope you too find the help you need :)

  • Have you had your kidneys fully checked out? Apologies, I'm a little kidney obsessed.

    p.s. It's the Doctors you have encountered who are not "well" in the head.

    (I would love to use stronger language)

  • No they haven't checked my kidneys out fully, again I was made to feel stupid when I question that my kidney function was deteriorating! as shown by my falling GFR - this was not in my head this is the blood test!

    I will keep that in my mind when I see the next doctor! Lol

  • I just want to thank you all for your words of support and encouragement:) I was in a bad place for a few days but reading all your stories and journeys has helped me to find the strength to tackle this and not to be fobbed off. I am going to change my G.P., it's something I should have done a while ago and I will get a referral to see Dr David D'Cruz on the NHS but in the meantime I think I will have to make a private appointment to go to the London clinic, I can ill afford it but I have a flexible credit card! Lol Thank you all again.xxx

  • Hi Calrie

    Good for you for not giving up. A positive ANA means there is something going on with your immune system although it isn't specific for Lupus!. Your symptoms are indicative of a connective tissue disease and Dr D'cruz has a good reputation for treating these illnesses without having positive bloods. I'm sure you'll do well. Keep us posted and good luckX

  • I did some research before i made my comment. Have they tested you for Lyme Disease? Western Blot IGg, IGm. Is the better test vs the Elisha test. Sounds like many of your symptoms could be as a result of a tick bite. Im not a Dr. But i do have a daughter suffering from this disease. She was Dx with many diseases before one very alert Dr. Suggested she might want to be tested for this. We have been through a lot because California does not recognize this as being a problem disease and therefore most Dr.s that have been knowledgeable have left the state, leaving only a few specialists to treat this illness. And no medical coverage because of the CDC not having the correct knowledge on any of the guidelines or treatment. Its cheaper to ignore this issue. So research this disease and then if you feel that it might benifit you, have the test.

    I hope you find out soon whats going on with your body. I do wish you well. Keep strong. Sometimes it takes everything we have, but hang in there.

    Please keep us updated.

  • Good luck Calrie x.

  • *Update*

    I had my first appointment at Guys Lupus clinic a couple of weeks ago and I was very dissappointed, I guess I was expecting something different from normal rhuematology depts but unfortuantely not, it's basically down to bloods, which I have just found out are fine. The doctor even thought that it was incidental when I said I felt better ( energy, aches, throbbing, brain, head sores etc all better ) after taking a recent course of chloroquine.

    I am now giving up on getting a diagnosis and will self medicate as I cannot continue like this, I have found a source for meds but if anyone can recommend please pm me.

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