Oh my goodness, I have heart pain, nausea and taking large deep breaths AND never associated it to SS, nor has any doctor. For over three weeks, the symptoms were on a rampage and I thought I was losing my mind. The nausea was non stop, pain and fatigue were out of control. I am so glad there are others that are having the same issues!! (not really happy that you are suffering!) That's why I love this site so much. I had my first heart episode 10 years ago, then 4 years ago the symptoms returned which ended in an ER visit and over night hospital stay. Then it didn't reoccur until 2 months ago. Of course I had it checked out, trips to ER but no one has tied my symptoms to my SS (which was diagnosed 18 months ago).
I'd like to say something about pain meds, I too, itch like crazy with most pain killers but have found a non-narcotic that works for me. My Rhumy has me take 100mg, time released Tramadol and then use 2-4 regular Tramadol 50 mg for pain break through. It is a non-narcotic, which was important to me because my brother was a drug addict and my Mom and Grandfather were alocholics, so I am terrified that I will become addicted, as the weakness is so prevalent. I have always been vocal about my family history and my concerns, which has helped my doctors make wise choices for me.
It is restless legs syndrome that I suffer from as does my daughter and to a lesser degree my son. The only time it went away was when I was pregnant but then returned. If you want a laugh, my legs used to kick in bed when I was asleep and I would kick my husband so he had to wake me up to stop me.
I take ReQuip XL slow release tablets which are marvellous. My Daughter in Australia also takes them. This slow release version has not been on the market very long. They were originally prescribed for Parkinson's but my Doc let me try them years ago but my Daughter wasn't as lucky as she had to wait until they were licenced for RLS in Australia.
Painkillers I only take when I really need them.
Thank you for reply.
SK said:
Hi Ali, good to hear from you again!
I had to look up Ekbom syndrome, which referred me to delusional parasitosis,
I noticed that you mentioned taking pain killers, and there is nothing better than a pain killer to make you feel as though you have bugs crawling under your skin. I have to take Benadryl (with my prescribing Drs permission) whenever I take a pain pill, and even that only helps a little bit. I cannot even begin to tolerate an extended relief narcotic (ER) as they are loaded with a type of excellerant such as caffeine that will only make it much, much worse.
Now I am not a Dr, and am not attempting to make a diagnosis here, but I go through this too and it's unnerving to say the least! It may be something to consider, as I can get this way if I drink too much iced tea.
I wish you well,
SK
Ali said:
I am 78 years old and I have had SS for about 30 years. It began with just dry eyes and mouth but I have slowly developed other problems.
I have osteoarthritis, costochondritis as well as Ekbom Syndrome which I have had from childhood. My ribs and chest area hurt to touch so I don't wear a bra any more. Most of my bones hurt to touch and my knees, elbows etc. are all swollen. I also have carpal tunnel syndrome and an operation was suggested recently and I think I will have to go along with that as I keep dropping things, I can't hold a book to read it and writing and sewing now hurts after a while.
I get very tired and I ache all over. I can only sit in a chair for a short time unless I take a painkiller so I usually lie on the settee. I have trouble getting to sleep at night, though I easily fall asleep during the day. I don't often see the end of TV programmes as I fall asleep. I get very irritable and easily upset.
I can actually do most jobs around the home but unfortunately I don't think I should, as I suffer for it later in the day. I just do things without thinking about it first.The best cure for me is to soak in a hot bath but it is not very practical.
About 18 months ago I began to have trouble breathing, mainly during exercise. My Doctor didn't believe I had a problem as she heard nothing when listening to my chest. It was getting worse, so about 6 months ago I happened to see a different Doctor who arranged for me to see a heart/lung specialist.
I had a lung x-ray which was clear so I then had a CT scan. It showed slight inflammation at the bottom of my lungs (Very mild bronchiectasis) which was not enough to cause my problem.
Because I had rheumatic fever as a child which left me with a very slight heart murmur, I had an electrocardiogram the other week and on Thursday I get the results. Very apprehensive.
About 4 years ago I noticed that when I had a photo taken my mouth was straight and yet in the past one side had always been higher than the other. I was worried so asked the Doctor who said it was definitely not a stroke but was due to ageing But I have never been totally satisfied with that answer.
I am really fed up and it is only in the last year or so that My Husband decided that SS was real and not something I had heard about, decided I had and so was all in my mind. He changed his mind when he discovered that I was charged extra on my holiday insurance to cover SS. I rarely get any sympathy. My Daughter lives the other side of the world in Australia and my Son lives some distance away.
I have gone on for long enough.
I am glad I found this site. It helps to know that I am not alone with this.
Costochondritis, that is what I have at this very minute I have had it a few times and man it is painful,,,, Only way to deal with it is take anti inflams until it leaves,,,, I have been in your postion and gone to the emergency room and they put me on heart monitor, and I stayed in over night,,,,, You know you have it by pushing down on your chest in certain areas and it feels very painful, take care chrissy
Exjbnz. So sorry… I have been there too… (Gentle hugs)). Feel better soon.
exjbnz said:
Costochondritis, that is what I have at this very minute I have had it a few times and man it is painful, Only way to deal with it is take anti inflams until it leaves, I have been in your postion and gone to the emergency room and they put me on heart monitor, and I stayed in over night, You know you have it by pushing down on your chest in certain areas and it feels very painful, take care chrissy
My Costochondritis is permanent. It never goes away. I had an echo cardiogram recently and it was a painful experience because to do the procedure she had to press the scanner onto my chest which really hurt. I told her but put up with it because I wanted to know if there was a problem with my heart. I have not had the results yet. My appointment with the heart and lung specialist is for the 21st October.
Regards
exjbnz said:
Costochondritis, that is what I have at this very minute I have had it a few times and man it is painful,,,, Only way to deal with it is take anti inflams until it leaves,,,, I have been in your postion and gone to the emergency room and they put me on heart monitor, and I stayed in over night,,,,, You know you have it by pushing down on your chest in certain areas and it feels very painful, take care chrissy