Does anyone on this thread feel rotten all of the time? Like EM is on the inside acting on internal organs as well as the outside?
For me it's more than just the feet (and now the hands). It's in my gut, the associated nerve activity diminishes my appetite and at night the inside of my chest burns. I also have this incredible feeling of malaise and always in a daze when awake.
I've had my catecholamines tested which were slightly above normal, but not high enough to consider a pheochromocytoma (adrenal tumor). Pheos can cause Raynaud's and/or EM symptoms.
graciousgeekgirl,
My answer would be no. I feel otherwise normal. Heck, I just finished up lifting weights for 2 hours and running 2 miles. I'm doing pretty well at the moment.
Hi graciousgeekgirl
Where did you find out that a pheo can cause Raynaud's and/or EM symptoms? I had a pheo, which in the end caused Cushing's Syndrome as well, as it had gone on so long without being diagnosed. I know that Cushing's Syndrome causes capillary fragility, maybe this is why. Note I say Syndrome not disease as Syndrome is caused by a tumour on the adrenal gland not through steroid drugs. I had my left adrenal gland removed a year last May but I still have EM.
I am convinced my other adrenal gland is now over producing as after the removal of the first one my blood pressure was perfectly normal without drugs and so was my glucose level. My blood pressure has gone up again and I am back on medication. However, it took years to diagnose my pheo as it's another very rare thing. My renal specialist was the one to diagnose it, but the endocrine people disagreed. It took a couple of years of my renal man and myself to convince the endocrine people that I had a pheo, even though the CT scan showed I had a tumour and my catecholamines in the words of the lab were sky high. Mine where nearly 4 times what the highest level should be.
I found mention of it here:
http://pheochromocytomasupportboard.yuku.com/topic/5645/Pheochromocytoma-symptoms-and-induced-conditions#.VkN7L7erRD8
Your endo people should have known that catecholamines 3 - 5 times normal is a strong indication of a pheo. That must have been tough living with that for a couple of years.
Your link indicates that pheochromocytoma induced erythromelalgia is secondary to thrombocytosis. It doesn't say pheochromocytomas can cause spontaneous erythromelalgia. Your doctor would have identified thrombocytosis as the likely cause of your erythromelalgia with a CBC (the first blood test they did on you) if your platelets were elevated.
This is all very interesting, thanks for this graciousgeekgirl. It's particularly interesting as I was part of that forum prior to having my tumour removed. I missed the mention of EM at the time. The pheo was there for much longer than a couple of years. You might find it hard to believe as I did but when they did the CT scan it was noted that it was there 4 years previously and hadn't changed in size. That was a CT scan I had for something else and it was never mentioned about the tumour on my adrenal gland. So, that's at least 6 years. However, I am allergic to beta blockers and my renal specialist said that is very often the case if you have a pheo and I went into anaphylactic shock and that was in the 90s, which makes me suspect it was there then. When the histology was done it showed hyperplasia and when I read up about that I found out it was me right from being born. All sorts of things that have gone on in my life all pointed to it.
I also noted reading the link you sent that EM tends to go away weeks or months after the pheo has been removed. Mine hasn't. So, I am even more convinced that my other adrenal gland is now over producing. However, our endocrine specialists are pretty hopeless. I told mine on my last visit that I thought this was happening and he dismissed it without doing any tests at all and discharged me, well it was a registrar not the consultant. Last year after I had it removed my blood pressure as I said was normal without medication and now I am back on the same as I was before the op, plus my glucose level is higher than it should be. I was pleased as well at first that my legs weren't as red or as painful as before the op, but that has gone back to even worse than before.
I think I will ask my GP to do some tests he can arrange the 24 hour urine test, which is the first thing to do. I might well find I have another fight on my hands! If that one needs removing I would have to be on steroids for life, but better than how I am now.
I had a high red blood cell count, but the last test that was done showed up as normal, which I didn't understand, except that I was on iron pills due to anaemia and now I am not. I wouldn't trust any doctor to identify anything these days as I have been let down so many times. Well, that's not really true I would trust my renal specialist who I was sent to because of my high blood pressure. My GP is coming to see me tomorrow so I might run all this through him to see what he thinks.
Polycythemia (high red blood cells) is different from thrombocytosis (high blood platelets). The only type of polycythemia known to be associated directly with erythromelalgia is the slow growing blood cancer Polycythemia vera. However, I was modestly polycythemic and did find it therapeutically beneficial when my doctors thinned my blood.
Yes, sorry I realise that now.
Sheltielife, when you had your pheo did you experience malaise in addition to the other symptoms? Reason I'm asking is I have been feeling just awful for months, sort of like being down with severe flu. My doctor wants me to try Lyrica as I also have neuropathy (tried many other meds, could not tolerate the tachycardia and water problems they brought on).
I'm not so sure this is all nerve pain as I feel jumpy all day, have vision trouble, hand tremors, abdominal clenching/shaking and lack of appetite, night sweats (not profuse as I don't sweat much). Can feel blood vessels tighten rapidly in the morning (Raynaud's). EM kicks in later but is more gradual. But the worst of this is the overall malaise I feel much of the time (eases up in evenings) and it's worsening. My catecholamines were slightly high a month ago (especially norepinephrine) but nowhere near 3 - 5 times normal. So the endo said it couldn't be a pheo.
I have nerve damage due to late diagnosis of B12 deficiency (caused by pernicious anemia), my doc then had never had a PA patient in his 25 years of practice. My current doctor is trying to blame everything on the neuropathy. I'm more inclined to consider rare things like pheos because seems like the rare stuff happens to me. As they say, "When you hear hoofbeats, it's time to look for zebras."
graciousgeekgirl Of course, I am not a doctor you must remember this foremost. However, reading your symptoms is just like I was to the letter! Do you have tachycardia even without the drugs? I ask because I did that is a symptom of a pheo. Just like you it was blamed on nerve damage, but the nerve tests showed only mild damage not consistent with my symptoms. I didn't have the skin biopsy another annoying thing I saw a registrar neurologist who said I needed one, but when the letter came from the consultant he said it wasn't necessary and I had never even seen him. yes I had malaise which made it hard to explain how I felt to doctors. Another thing is you said you rarely sweat much, yes another symptom of a pheo that's the reason you can't cool yourself down as sweating is the way the body cools you down normally.
You are not going to believe this or maybe you will going off your experience the first endo I saw said to me that statistics show it's very rare therefore you haven't got it. To which I replied and asked him if he did the lottery as statistics show it's very rare you win. I didn't get an answer. My husband was with me at the time and so the next thing was we just walked out and I asked for a second opinion. In fact I paid to see one private but she was no better.
Keep pestering you will get there in the end!
Yes I have tachycardia, especially when I stand, but attributed it to my B12 getting low. Maybe it's really not. Before my B12 deficiency was diagnosed, I had episodes of tachycardia that I was told were panic attacks.
Some meds like Nortriptyline and Bentyl have caused tachycardia but I'm off all of them now. My BP is higher than usual for me but not above normal, mine used to be low..
I regularly take only the following: B12 and folic acid (for the pernicious anemia), iron (had dropped over the past year to low end of normal), alpha lipoic acid (for nerve pain), probiotic. Just got some Nasacort as having problems with congestion that lasts about a half hour around the same time every morning, and took a Benedryl last night to try to get better sleep as have been waking often (didn't help).
Last April I had tests for small fiber neuropathy (QSART and sweat test) so I know I have that. Had thought it was caused by B12 deficiency. But maybe not, most people with B12D have balance problems but I really haven't, other than weak/tired. And I haven't heard of anyone with PA who has the level of malaise that I seem to have.
My appearance hasn't suffered much, so my family and doctor don't believe I'm very sick. But I feel just awful. I did find an article where there were a few patients with a pheo whose catecholamines were in normal range.
I'll push my doctor for another test, maybe another 24 hr urine test and perhaps ultrasound? It's a struggle to get tests ordered as I'm in an HMO and my experience similar to those dealing with the NHS in the UK.
CarterDK I think you put the wrong link in your comment I know you put medicine in brackets but a direct link is this
https://en.wikipedia.org/wiki/Zebra_(medicine). When I clicked on yours it just told me about Zebras, nothing to do with medicine. I hope this link works better to explain what you meant. OK graciousgeekgirl got it the wrong way round, but I think we knew what she meant!
graciousgreekgirl don't we all go through that told that it's panic attacks! The thing about blood pressure with a pheo is that it isn't consistent it can be down one minute and up the next. What you really need to check your blood pressure is a 24 hour monitoring of it that shows how much it can differ. The other thing that makes it awkward to diagnose is that a pheo doesn't over secrete all the time the reason you have to have a 24 hour urine test. The normal scan they do to diagnose once levels are higher than they should be of metanephrines is a mIBG scan. You have to go twice one day and then the next. However, even that can produce a negative if the pheo isn't over producing at the time of the scans. That happened in my case and another reason they said I hadn't got a pheo. As for ultrasound I don't think that would be good enough. One of the problems is that pheos can over produce even when they are very tiny.
I couldn't check that link until I posted it and even that one didn't work correctly, sorry.
Did you get really bad tremors? I've had a tough morning, tremors all through core of my body not just hands. Also Raynaud's is bad, hands get cold so quickly.
I had a 24 hour urine test a couple months ago and my catecholamines were just barely above the normal range. I have trouble walking so used a small cooler and ice packs to store the collection container near the toilet so I wonder if it wasn't cold enough to preserve all of the catecholamines. I'm trying to get my doc to order a repeat test. If I get another test, I'll use the frig.
Had appointment with the chief endocrinologist, he asked me my symptoms then said I didn't have a pheo. I don't have splitting headaches or high BP which I think are primary symptoms so believe that is why he said I didn't have a pheo. Did not do a physical exam. I think MIBG scans are very expensive so not likely unless I can catch excessively high catecholamines.
But I continue to feel worse every day and the daily cycle of things leads me to believe hormones are involved. And raised catecholamines would explain why I don't feel well. The difficulty is in figuring out the cause, there don't seem to be many.
Yes I did get awful tremors. One time during the night it was more like an epileptic fit, my whole body was shaking. I had awful trouble holding a cup of coffee and one morning I shook and it went all over my curtains! Certainly temperature for storing your urine must be low, so maybe that might be the reason the results weren't very high. I know it's a mess but you do really need to fridge the contents. I have a little mini fridge which I can take in the car, maybe if you could afford one that might be the answer for your next test. Also, was it just catecholamines that they tested or e.g. Normetanephrine which is what noradrenaline is converted to in your body. That gives a more reliable answer.
I didn't have what you would call a splitting headache in fact I never used to call it a headache until I learnt better. It was more a pounding head, like you feel your pulse pounding in your head. MIBG scans are expensive and so you are right they are not normally done unless the 24 urine shows positive results.
The reason they said panic attacks is because they produce similar symptoms. The trouble I had was that the longer it went on the more stressed I got which made things worse.
I am a firm believer in getting a second (or even third or fourth) opinion, but if I had multiple doctors who were all in agreement, I would accept what they were saying. From my own experience, I think anxiety can manifest as physical symptoms. When I thought my knee problems were Rheumatoid Arthritis (my mom has severe RA), I started having poly joint pain. I'm still not sure if that was real or somatoform. I mean, I REALLY believed I had Rheumatoid Arthritis. For 2-3 months, it consumed me.
The doctors I was seeing, on the other hand, disagreed. My rheumatologist said my symptoms didn't fit RA. I wasn't sore in the morning, my blood work showed no markers of inflammation, and x-rays showed no cartilage damage. Still, eventually he relented and diagnosed me with "seronegative arthritis." He knew I had something and was out of ideas.
Then about a week later, once I realized hot water ignited my symptoms, I became convinced I did not have RA. Shortly thereafter I discovered erythromelalgia and all my other joint pain went away. Coincidence? Or was the pain in my other joints somatoform because I so strongly believed I had Rheumatoid Arthritis?
Before I was diagnosed, I had so much anxiety that I couldn't even focus to watch a tv show. It was like my mind couldn't process the words being said on screen. I was a mess. I thought every tinge of pain was the beginning of the end. Obviously, it wasn't all in my head. I did have a serious medical problem, just as everyone else here has a serious medical problem. But I would strongly caution against hoping to have another serious medical problem as a Hail Mary pass to solve your current medical problem. If doctors are testing you for something and saying you don't have it, the odds are in their favor.
If I had done as you say and taken notice of 3 endos I might have been dead by now! Fortunately I had my renal man on my side he was the one that first thought of it and arranged all the test and argued with the endos all that time. The histology proved him right in the end and thank goodness the 3rd endo gave up in the end and that’s why the op was done. I see where you are coming from but docs aren’t always right.