In my last two posts where I explained my symptons for possible vasculitis I received lots of helpful replies which pointed to possibly CSS. I am finally going to a specialist for a renal exam on the 29th August and can't wait to get a firmer diagnosis and hopefully medication.
Since my previous posts the 'flares' have really reduced, to a point where I can count the number of spots on each leg on my hands. I still feel tired and my weight has gone from just over 100kg to 87kg since the original flare. I have had to stop going to the gym as my main current symptons are joint/muscle pain. The weight loss is probably due to my eating habits whereby I have little interest in food. It's quite funny when people tell me how good I look (with the weight loss) yet I've never felt worse inside.
My main sympton is 'armpit pain'. This is the best way of describing it. I have constant pain in my shoulder, neck, chest and armpit. The pain seems to move around these areas and other than ibuprofen which allows me to sleep for around 4 hours before it wakes me up I just hope that if I am prescribed prednisolone (I think that's how it is spelt) that this finally removes it. I have stopped going to the chiropractor simply due to cost and also it doesn't seem to help, only makes it worse for a few days then returns to normal.
Has anyone here had experience of this (armpit pain)?
Oh just to add the hospital paperwork I was given when in Spain in March (where the original flare happened) had some interesting information. I translated it and found that my leucocyte level was above the 'normal threshold', neutrophil were exceptionally high, glucose was above normal threshold and my glomerular filtration GFR less than 60 or in the words of the spanish paperwork 'moderate decrease' level just above 'severe decrease'. I'm surprised they told me they couldn't find anything at the time as the paperwork clearly shows am issue!
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italy321
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Hi Italy 321, as you haven't been properly diagnosed I'll leave you in John's capable hands. Just one question though, 'Do you have early or late onset asthma?' I am asking this because having asthma myself I have been advised not to take Ibuprofen. If I have prolonged pain, which is not very often now, I take prescribed Tramadol.
Thanks both, Derek I don't have asthma now but did in my early years up to about late teenage. I'm now 34.
John the pain is more in the armpit not the rib cage. It's not a short, sharp pain its more constant, just differing degrees of pain. At night it feels like something is being twisted in that area. In the day just feels like ordinary shoulder pain coupled with a neck 'twitch' and/or chest pain.
it could be referred pain but it will be interesting to hear what your consultant has to say on Wednesday. Do make sure you make your consultant understands all your Symptoms and also your past history of Asthma. just one more question have you ever had high levels of Eosinophils in your blood count?
Once I have been on Thursday I will let you know the outcome. As regards Eosinophils on the paperwork I translated this count was 161 against a normal threshold of <800 so if anything it might have been low at the time. When having blood tests in the UK this information has never been shared with me but my GP has never commented on that specifically. What were your thoughts with regards to the questions you have asked i.e. do you have any opinion on what may be causing this?
I live in the states and have the same symptoms as above poster. Coincidentally my eos count is high. Doc doesn't seem concerned but I wonder why the count is high. Any thoughts?
Well following my visit to the specialist on Thursday I am a little wiser with regards to what is going on. My specialist advised me she thinks I have Henoch-Schonlein purpura coupled with IgA Nephropathy. I had further samples taken and have been referred to another specialist for the purpura (skin/Joint problems) and will continue to see this specialist for the kidney, next step is an ultrasound of the abdomen. Around 2 months waiting time for this.
Hi I have similar pain started very recently was already seeing neurologist for other nerve pain in legs and phoned re this issue to hurry up appointment. Extremely painful at night and started with extreme senssitivity over shoulder weakness and pain in arm hope you get some help as very unpleasant
Just an update on my previous posts. Thankfully my ultrasound and kidney tests came back fine and I have been discharged with regards to this. My joint pain/problems have worsened however and I am now due to see a Rheumatologist on Thursday to discuss this.
I have had an x-ray of my shoulder and a cervical MRI to see if I have any bulges in the neck that may be referring pain. Results show all ok minus some normal wear and tear of the shoulder joint.
I am hoping the rheumatologist comes up with an answer as the pain is getting unbearable. Whereas the pain used to travel from my shoulder to the front of my chest and then to the armpit - it is now all over. I can't move my neck down at all and turning it left or right hurts. I get pain and spasms in my shoulder blade and pain in my chest/pec area just under the collar bone. Doing any kind of exercise hurts, driving to work is torture, sitting on the tram with the small jerks as it turns corners is excrutiating but I am determined to not have any time off due to this as am doing everything to fight it.
I have never been so tired in my life and without regular ibuprofen it would be impossible to get any sleep whatsoever.
I still get a rash on my lower legs every now and then and strange feelings/swelling on my skin.
The specialist who looked at the MRI scans suggested that Prednisolone would be the way forward - what does this steroid actually do? Anyone experienced similar?
I have had fatigue and armpit pain on and off for a couple of years with some lymph node swelling. Sometimes my armpits and upper arms really burn and feel twisted inside at night. My condition has puzzled my GP and I have had so many fatigue and pain flare ups plus sleep and mood problems as well. I tried to exercise regularly but extreme fatigue kicked in after a short jog one day and now I have chest problems and am waiting on scan results. I take paracetamol and codeine for pain as I can only take so much ibuprofen before I get reflux. A recent referral to rheumatology was not very productive and they concluded that even though I have the vasculitis antibody the disease is not causing any nerve impingement on my joints. A recent spate of facial twitching, leg twitching, knee pain, numb feet etc. begs to differ on the nerve issue really and I will be asking for a different referral once the chest problem is identified. The things I have found that help with my condition are eating little and often, avoiding processed food especially heavy carbohydrates like white bread, early nights, less caffeine, regular but gentle physio on my legs neck and shoulders, regular short walks, plus playing my guitar is relaxing too
Hi yall I am currently 21 and am experiencing pain/discomfort in my right shoulder/chest also my right underarm feels swollen ans the back Bart of myshoulder blade feels as if it's doing a thumping/rubbing thing. I also have neck pain and stiffness as well. Usually occurs mainly at night. I just had an anxiety attack not too long ago as well. But this is unusual I've had anxiety attacks before and have never felt like this at all. I tried to sleep but got maybe 15 minutes of sleep before it woke me up. I have no idea what I'm dealing with or where to even start. Also my right breast feels swollen with the other symptoms I'm having. This is scaring me to death and had come close to sending me into other anxiety attacks(thankfully I've fought them off before they could become full blown attacks). Any ideas or opinions as to what's happening.
Hi guys. So glad I have come to find others that are having similar pains to me (not that I like the fetch that we are all suffering with this)! I have now been experiencing this pain under my right arm pit and sometimes it radiates into my chest. More recently it is effecting me right shoulder and the shoulder blade. It has been freaking me out a bit but I am now reassured to see that I am not going crazy and other people are experiencing this too. Think I will now go to my GP. Hope you all find out what is going on. Xx
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