What is wrong with me! Fibro ? Lupus? Rheumatoid? Or something else? !!!!!!!!

[Jobates]

Ok so I definitely have degenerative cervical spinal stenosis that's being dealt with and a separate issue.......or is it? My poor health started just over two years ago in conjunction with my mum passing away I don't know if that has some relevance ( the stress of caring for her and her passing away) I was dealing with horrific pain in my upper back near my right shoulder blade and lower neck , pain that had me in tears a sickening pain that no pain killer could reach, and no position would relieve, an MRI showed severe foraminal cervical stenosis and disc degeneration at C5/C6 and C7 , so surgery was planned as there was spinal nerve impingement. Whilst waiting for this I had days at a time when I couldn't leave my bed due to feeling so unwell , not just the pain , I had fatigue like no other, I absolutely couldn't do a single thing even going for a wee was a mammoth task that sapped me entirely of any energy I had, and I would sleep for 24 hours at a time , I also had symptoms similar to a fever . This went on for over 12 months whilst waiting for my spine op , it was 2016 when Preston hospital , especially the neuro surgery department was under a massive strain and were cancelling ops left right and centre so my wait was over 12 months. Anyway it got to December 2016 when I woke one morning and my hands were on fire! It felt like there was boiling water running through all my fingers and I could straighten them or bend them completely it was worse when I woke up and also my knees had a throbbing awful feeling in them too and I couldn't bend them. So i went 5o see my GP, he referred me to a rheumatologist straigh5 away, my face was all swollen up too! This went on for two months , my hands were in unbearable pain now on top of my back pain, the anti inflammatory tablets prednisolone weren't working at all. Finally get to seem rheumatologist who took bloods etc and X-rays and he gave me an injection into my bum called methylprednisolone in two days my symptoms lessened by a quarter . Early 2017 and I'm still struggling with the wiped out days and sleeping for 24 hrs slweating and feverish loss of appetitive . April 2017 have my spine surgery ( I can't go into that here too many things went wrong !) all I will say is it's now November MRI scan shows I've still got trapped nerve at C6/C7 got a nerve induction test tomorrow and saw my rheumatologist today. So I've got problems with my nerves, severe pins and needles down my arms and when I sit to wee within 1 mins my legs have gone completely numb and when I stand my legs are in agony and I have to hold onto the radiators to steady my self, several times I just lay on the floor until my legs work, every night when I wake from sleep my right arm is dead completely and pins and needles in fingers, also my legs have pins and needles and when I get out of bed a stumble and it takes ages to get my balance , I'm also in a lot of pain throughout my body which takes about an hour to ease. I'm stiff and aches all day worse when I sit and inactive. Initially rheumatologist thought I had rheumatoid arthritis but he said my rheumatoid factor was negative. My ESR rate is always high and bloods always show high infomarkers. His second diagnosis was inflammatory polyarthritis. My knees are the worst as I can't bend them to squat down if I need to get something out of a low cups or off low shelf in supermarket I can't because I know I can't get back up and that is no exaggeration! My elbows on the inner side hurt and feel spongy.also the heel under my right foot at night is on fire it's excruciating and s only eases,apwhen I get out of bed! but today when I went to see him and said the tablets he put me on ,rheumatrex,aren't improving my symptoms he's now said I've probably got fibromyalgia!! He said I haven't got lupus the last time I saw him , so that must be from a blood test too. What I want to add is this, I've always been an ill person , I don't get a sore throat I used to get tonsillitis that then led to quinsy, 3/4 times a year , so I had my tonsils out, I've had two major kidney infections that's been an emergency and been admitted to hospital for a week at a time, I've had pleurisy twice and in hospital. I've had random infections in knee and elbow called bursitis and had more courses of antibiotics than I care to count. I know that's bad but when you are so ill and poorly and in pain you just want it to go away. I just don't know if I trust this rheumatologist and he never listens to me either ! He is sending me for X-rays on my knees hands and feets to see how much if any cartilage wastage has happened since my last X-ray. So sorry for the long post guys but it's a long story! I really hope I can get some advice and your wise insight into what you might think I have. I am at my wits end and so terribly miserable with it all and there is no light at the end of any tunnel yet, I know I shouldn't complain it's only been two years and I know a lot of you have been struggling and battling along for a lot longer than me. Thank you for taking the time to read my post and if you leave a reply I'm really very grateful thank you xxx

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Hey so sorry your suffering So much you can complain,why shouldn't you,you've been and are going thru a lot!! That's the good thing about this site you can get it all off your chest, I really hope things improve for you,good luck ☺

[Mdaisy]

Good Morning Jobates

Thank You for posting and I must say you seem to be experiencing so many symptoms that it might be that the Rheumatologist is having difficulty piecing the jigsaw together which can often happen in relation to Fibro and other conditions with similar symptoms that are ongoing especially relating to chronic illness.

I see you mention degenerative cervical spinal stenosis as a primary diagnosis and it could be that you have Fibromyalgia secondary to this and joining the jigsaw of symptoms including a possible tender point test may aid diagnosis. However, as I mention the Rheumatologist will be looking into all possibilities before this diagnosis, unfortunately many members including myself struggled during this time as it is a lengthy frustrating process. I know this doesn't really help your current situation apart from that we do truly understand and are here to listen if this helps in any way. We sincerely hope it does as we are a very supportive community.

Can you maybe keep a diary of symptoms which may help connect the dots? When is your next appointment with the Rheumatologist or has he referred back to the GP? Saying you probably have Fibro must be so confusing, you may need to look for confirmation as obviously you need information on how best to control the symptoms if Fibro is the diagnosis.

It can be incredibly upsetting and frustrating but you are not alone and can always post here

I wish you all the best and hope things become much clearer very soon.

Emma

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Jobates I too went thru a similar experience 16 years ago when I watched my father lose his fight for life, Im sure the trauma set off fibro. I too had a steroid injection into my bum which really did calm things down, I continued to have the injections every 6 months for a couple of years, I now manage with conventional pain relief and hydrotherapy weekly. Your Knees- I use the hydro to excercise my legs, I was told to get my upper leg muscles pumped up and they would take over the knees where cartiledge has worn. It has worked its not perfect but much better to cope. The hydro doesnt hurt you can excercise away with no pain and its lovely ans warm.