Utter Despair!

[calrie67]

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!

[lupus-support1 Administrator]

I am so sorry to read your post and how distressed you are feeling. Not being believed or feeling you are not being taken seriously can feel devastating.

You mentioned that your family does have autoimmune conditions and therefore an investigation seems reasonable to have asked for. I also think that a referral to see Dr David D'Cruz, who is the Head of the Lupus Clinic at St Thomas' Hospital might be worth considering.

I am sorry to say that your story is familiar. By that I mean that many patients complain how difficult it is to have a diagnosis. Not all rheumatologists are expert in lupus. Lupus is notoriously difficult to diagnose unless a patient has a "malar rash", positive ANA and lupus nephritis! Most lupus patients do not. Their symptoms can be subtle and symptoms can develop over time. Many patients also complain that they are assumed to be depressed - anyone who has the kind of unexplained symptoms that you are reporting is bound to be depressed sometimes. Just because someone may be depressed does not automatically mean there is no physical problem.

Some patients are "sero-negative" - many Members at the LuPUS MB (I recall registering you yesterday) are also in this situation. Even experts in lupus rarely diagnose immediately since to mis-diagnose a patient causes even more anxiety and leads to a distrust in the doctor.

You could return to your GP and ask for an NHS referral to see Dr David D'Cruz. I can say that he is an excellent doctor.

Please feel free to post this on the LuPUS MB too - it doesn't matter which forum you choose, just sign in. There are some articles that might help you. In particular a paper written by Dr Graham RV Hughes to help doctors recognise and diagnose lupus: lupus-support.org/LuPUSMB/i...

If you need to talk, you can contact me at the LuPUS MB with the private message service which is more secure.

With good wishes,

Ros

[calrie67 in reply to lupus-support1]

Thank you Ros for your encouraging reply

[Peggys1]

I sympathise SO much with you. I have been going through this for around 7 years and have had several days like the horrible one you've just come through. My husband and I have gone for coffee after a longed for, also dreaded, meeting with a consultant. We have sat there in complete silence, speechless with despair, frustration and disbelief. It takes weeks sometimes to get over an appointment like that, where you feel your voice hasnt been heard, but you have to. You are the ONLY expert in your body and your symptoms. You need to find the courage you undoubtedly have and document all symptoms and keep going to your GP. Dont let anyone dismiss you.

I'm sorry. It sounds exhausting I know but you'll find the energy you need and, if you dont, who will?

I wish you patience, dertermination and success.

Keep updating us.

[lupus-support1 Administrator in reply to Peggys1]

I am so sorry to read this about you Peggy and how understandably distressing this is for you and your husband.

How are you?

With good wishes,

Ros

[calrie67 in reply to Peggys1]

Thank you - I've managed to find my strength again

[Kazunlocked]

Thinking of you both. Unfortunately I can empathise with many of your experiences. Now diagnosed & on stable meds. Is this as good as it gets? Hurt every day, muscle spasms almost every day, brain fog most of the time, 9/10 both sides sharp flank pain etc etc May 2016 be better for all of us. Kaz xx

[lupus-support1 Administrator in reply to Kazunlocked]

Dear Kaz,

I wish I could tell you definitely that lupus symptoms disappear altogether, but I cannot as no one can predict. I can tell you that many patients find they can come off all medication. People-affected-by-lupus can and do lead normal lives, have the same life-span, marry, have children etc

At the same time, lupus patients also need psychological support, especially when times are difficult. No one should be alone.

Here or the LuPUS Message Board is where you can safely talk. The LuPUS MB is more secure.

I also hope that 2016 brings relief from pain for all!

With good wishes,

Ros

[Kazunlocked in reply to lupus-support1]

Thanks for that Ros. generally I am positive; but some days.........

[lupus-support1 Administrator in reply to Kazunlocked]

I understand, but sometimes we need to be able to express what we are feeling as it is impossible to be positive all the time.

Sometimes, the word "positive" can make us feel as if we fail because we cannot be positive all the time. Therefore, I hope you can get the understanding and help you need and deserve when you need this for yourself!

With good wishes,

Ros

[Atibrat Moderator LUPUS SUPPORT]

Cal I have been there and have had and still do almost every symptoms you list. I was diagnosed with CFS and then Fibromyalgia until I went on a cruise and broke out in a horrible rash. My doctor gave me a shot of steroids and on my 2 week check up was surprised that it not only took away the rash but I felt wonderful. He had not heard that in a long time. I had no muscle or joint pain, I was not fatigued and had more energy than I had in years. That is what lead my doctor to think of an inflammatory problem. He ran blood work and my ANA was high with a few other things which got me to the rheumatologist and my diagnosis. It still took a few more years for the mylar rash to appear but it finally did. I also have symptoms of other connective tissue diseases but the treatment is the same.

I remember how frustrating it was to not know and even when I was first diagnosed it was still frustrating because you can not just take a medication for a couple weeks and have it go away.

Ros gives wonderful advice and getting another opinion and seeing someone who is highly educated in this disease is important. I have learned through years of treatment that no matter how well I work with my doctors with medication I still have to control my stress and get plenty of rest. If I get really stressed and overly tired I can get symptoms of a flare the next day. It taught me just how hard stress is on our body.

While you are working to get 2nd opinions and hopefully get the treatment you need try to take very good care of yourself. I think of this disease like diabetes. I need to take medication but I also can do a lot of self care to help control my symptoms. I listen to my body and rest as much as I can when I feel exhausted (often) and I have a CD player in my room with relaxation, guided image and hypnosis CDs. I go in my room often to destress.

I also feel better when I eat healthier and drink a lot of water. Taking a B Complex everyday helps my energy level but talk to your doctor first.

It is hard but hang in there and don't give up, I believe most of the people on here will agree that it took awhile and many different doctor visits to get a correct diagnosis. I know for me the disease appeared over time. The first year was just fatigue, the 2nd year the aching muscles and joint pain down to the bone, then one day the whole body rash from being out in the sun. I did not think I would be one who got the mylar rash but 3 years after I was diagnosed it appeared. I was almost excited because I felt like another piece of the missing puzzle showed up and that is horrible actually but lupus and CTD are complicated.

Good luck and you will always find understanding and support here.

Tammy

[calrie67 in reply to Atibrat]

Thank you for your support

[lupus-support1 Administrator in reply to Atibrat]

Thank you again Tammy for your support to others. I hope you also feel you can get support and understanding when you need this for yourself.

Be well!

Ros

[Whathappned]

Hi

Just wanted to say don't give up. Keep going to the GP with your symptoms. It's been a few years since I started with symptoms and a lot of similar ones to you.

I put it down to depression at first, having had previous depression but this was different.

I also put it down to doing too much, young children, degree module and like you building work. Proper labourer role, knocking walls down,moving rubble and helping the hubby totally change our house and I did all the painting as well.

After all the work on the house was finished and the module completed I started a new job. Initially I had energy to work 10 hr days but at some point it changed and I was so exhausted until one day I just gave up. I put it down to the lack of light in my room causing seasonal problems and bought a light box for daily use. I initially thought it was working but once back at work it started to return. My room had 2 strip lights

[Whathappned]

Hi

I hadn't finished and it saved 😏 Anyway it got worse. I'ts been a few years with the GP even trying HRT. I suggested CFS when the initial rheumatologist said their wasn't anything she could do. I had raised Ana and dsdna, aches in joints and muscles, hot flushing, dry mouth etc.

long story short eventually I saw another consultant who after identifying raised CK (muscle enzyme) would not confirm CFS and referred me to another rheumatologist and she started me on treatment with just a list of symptoms.

Be persistent it's worth it. You will find someone who listens but as Ros says they need to have an interest in Lupus.

By the way, I'm back to work, not doing as many hours but still managing 3 full days and a life outside of work. I'm not as fit as I was but I'm managing to paint our living room this week and about to start a dog grooming course which needs stamina and I feel I'm back to that fitness (when I pace myself).

It's been a long slow journey and it has its up and downs. I won't let them have my antidepressants back, I tried and it wasn't worth it. The GP agrees, as he says I'm wining no need to put it at risk. I tried to lower the dose and it had an effect. At the mo I'm lucky and I plan to keep it that way

For me the drugs - cytotoxic or not have been well worth trying. Keep going back to the GP! They don't suit everyone but keep going back and make them listen. Remember they all have their knowledge and expertise, it's just finding the right doc

Good luck with the fight, my thoughts are with you x

[calrie67 in reply to Whathappned]

Thank you - I will keep going back to the G.P. and yes it is a fight.x

[lupus-support1 Administrator in reply to Whathappned]

Your story is inspiring because you tell it like it is!

It is good that you can share your story.

Thank you.

Be well!

Ros

[calrie67]

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

[lupus-support1 Administrator in reply to calrie67]

I recommend the London Bridge Hospital Lupus Unit: londonlupuscentre.co.uk/

In particular, I would recommend seeing Professor Graham RV Hughes, who is an expert in lupus and has an international reputation as one of the leading researchers: londonlupuscentre.co.uk/abo...

Dr Hughes has trained most, if not all, the lupus specialists in the UK. Dr David D'Cruz is also there and was one of Dr Hughes' "students". Therefore, you would be in excellent hands.

Might I suggest that you ensure you have copies of all your blood tests, scans etc.

I recommend your writing down a list of all illnesses from childhood, no matter how irrelevant you may think. The more information the better.

Include too, all your symptoms and dates if possible when they started.

Many of us feel awkward, embarrassed about saying everything as this may appear we are "hypochondriacs"! I can assure you that Dr Hughes would not have such thoughts.

I do hope you are able to get this appointment, but don't be surprised if there is a waiting list as Dr Hughes is in great demand; he is worth the wait.

Please send him by best wishes!

With good wishes,

Ros

[Freddi1019]

I'm not a doctor, but it sounds like Luous. You have a positive ANA and have ALL thr symptoms of Lupus. I had similar symptoms and finally was diagnosed with Lupus March 2015. As soon as I was treated for Lupus blood pressure went down. Now I'm on half a pill, instead of 2. A G.P. doesn't specilize in a disease of this magnitude. Get another RA specialist. Untreated Lup us will kill and distribution healthy organs. Inflammation can and will affect healthy organs. Don't give up on YOU!