Hi everyone, As we take on another season of heat everywhere, I complain about the heat each year, and I am sorry. I hope you all are doing the best you can with this wave.. My question is, does anyone out there have Hypertension with SLE? Many more symptoms seem to be aggravated by the changing weather. I do all I can to regulate my environment, i.e. heat cold, humid, etc. My Cardiologist is very thorough, and caring, he is very concerned about not having much reasoning for my Hypertension with SLE other than my PVC. I have been on lisinopril, amlodipine, Procardia, and Cardezem for a year now, and nothing is changing my BP. My SLE and Raynauds, and other flares are much closer together than ever before yet, my labs from the past few months have been negative, seronegative, or fruitless, my symptoms seem to merge together. This I found is making it very hard for the Doctors to separate the triggers of conditions and symptoms. Being a Comorbidity patient has become daunting for me and them. Now, my new Rheumatologist adds Vasoconstriction to my list. I have been told by phoning my GP to go to ER Hospital for symptoms that seem uncontrolled or unresolved. How do I point out which symptoms to the ER, when I have so many? Times like these I just give up.Sorry, going to do some soul mindfulness I can't take much more.. You are all so very kind for just reading my blues. They may need to add medically induced depression to my list. My blessings to all in peace... thestormy sunshine
Blood Pressure and Heat, SLE and more.😕 - LUPUS UK
Stormy - never apologize for complaining about the heat or anything else. I just returned from vacation where the weather was perfect, knowing the return to the city heat begins the real lockdown for me.
Would you be able to explain what you feel like in different temperatures and humidity levels? You have Raynaud’s which is an autonomic issue. Your doctor wrote « vasoconstriction « on your record. I wonder if there is a relationship.
You seem to have trouble regulating your environment, which is the job of the autonomic system. Just thinking ..
Hi Kay, Thank you for the informative idea. You are right, I do have a very hard time regulating my environment with my body and symptoms. I am going to make a point to say this to my next Doctor visit. I think you are on to something with this, I so appreciate that, it gives me new insite, and thought. Seems Doctors today lack these qualities, or the time. Happy to read you had a vacation, where did you go// How was it. and who are things in the Big city there... I wish you a wonderful summer, stay safe, be well, and all my blessings and love to you> Love, Thestormysunshine Xxxx
Oh my lovely I feel for you.i know everything with lupus is daunting and it's easy to feel as if you are the only person in the world suffering but one thing is for certain.. you are not alone.i have high blood pressure.my lupus ran riot before it was diagnosed and inflamed my heart putting me into heart failure for a year .I'm now on moxonidine (previously clonidine but that's gone out of manufacture) and that does the job of keeping it under control most of the time but if I get stressed or my lungs flare then it will rise .negative bloods are nothing new with lupus.i dont think your gp is helping you they should be listening to you rather then palming you off to the hospital.i have over the years worked out my triggers and what to do about it .I have also learnt to read my ache and pains and now know what to "give a few days " and what to act upon.all of which comes with the experience of living with lupus.also I try not to over think things .I was awake Friday night with a mysterious pain in my right hip.thats a give it a few days scenario and its now easing.things with lupus come and go and flit around the body and by recognizing that it becomes easier to deal with and less anxiety inducing.when I became ill I had help from a rehabilitation psychologist who helped me come to terms with living with a chronic illness.it is a very long rollercoaster of a ride but you will get on a even keel and stabilise. Stay strong Sending you big hugs xxxx
Hi dear one, again, wonderful insite. See that is why I posted, so many of you great minds help others, and I so am grateful for this. The pains and symptoms I have been logging in my journal for years, I do go back a view from time to time, like you said,giving grace for many of them for a few days, but, these are all crashing in on top of the "regular" pains and symptoms. So I second guess what is what more so now then before. I am not a big fan of hurry and find what is wrong now kind of person, but after so many years, and getting older, I am frustrated as to what to freshly say to Specialists, and other health care providers. My hubby knows how I am in a regular sense, he is very good at detecting the differences. This mess my body is in won't listen to my techniques, making much harder for me to discern those things which are more impending. I know in my mindful heart, that things are what they are, but my heart is playing tricks on me the past months. A rehabilitation Doctor, interesting, I have Dr. Seth Gilliham PHD Psychologist on line, and at my calling for any issues, and he is a world of wonderful help to me. I make all my Doctors aware I am seeing him. My Gp, is well, just a link in the chain. I wish for a better one, and am searching. He listens, but has no clue as to the magnitude of Autoimmune diseases or such. I am sorry you had to go through heart failure, see, this is something I am concerned about also. My BP is not well controlled by medications, I will be calling my Cardiologist this week, and asking guidance there. Thank you for sharing all this information with me, I pray you are doing well, keeping fit, and safe,my blessings to you and yours, Xxxx thestormy sunshine
You put well the storm , I relate , it’s daunting other symptoms crashing on regular, it does leave you second guessing with nothing else to go on, it is hard to know what to freshly give specialists and gp’s who play no part other than link , it’s all so hard.
Dear spanielmadladys reply was very good to read, she is right it is a rollercoaster, and your struggles are well founded , I hope her reply lends some comfort, and lowers some of the stresses. Our minds can add to anxiety’s , I know mine has at times, plays tricks but listen to your mindful heart and not the trickster, 🙏🙏🤗
Thank you for the thumbs up stiff 19.some people( not on here) see me as over opinionated and that's the last thing I want on here.one thing I am doing is speaking from experience and whilst we may all be in the same boat our experiences differ and if mine can help then that's a plus.have a good day 😘
No I think sometimes with so many symptoms you can get in a state of panic, I have no diagnosis and have been guilty of this in past with array of symptoms leaving me fearful. Not that I don’t worry now but I don’t panic and I am learning to deal with present and worry about only what is present not what may happen, it is very different for us all, and some of us might in hindsight panic rightly so but all perspectives on here can be helpful if not to one then another. Yes it is a rollercoaster an lends to fact that it does play with the mind hugely too and I’ve been very down and see stormys well founded stresses. That’s why it’s good to be here, everyone’s experiences and offerings , I just guess your reply struck hope at the right time, hopefully for the storm too 🙏
Best wishes 💐
Hi Stormy, I’m so sorry to hear you have so much to deal with at present. No wonder you feel down! Not unnatural and we all feel that way when our symptoms get worse and there is not a lot we can do about them.
I have SLE and Raynauds and I find I don’t adapt well to changes of temperature/humidity either. As I often say to friends, my thermostat is broken! But it is good to let off steam and share your thoughts and feelings with us here who understand. Never hesitate to do that.
You seem to be doing all the right things to help you cope with the changes in weather. Mindfulness meditation is a great way to help keep you calm and relaxed because stress is one of the worst things for both Lupus and BP.
Sorry I can’t help with advice or tips but you are in my thoughts and prayers. Hoping you feel better soon Stormy. Love and hugs. 🤗😘🥰🙏🏻🌸🌼🌺
Dear Spotty, Thank you for your ever kind words of comforts and care. Sorry we and so many have to deal with weather, and autoimmune diseases. The weather is a huge trigger for me, even in controlled environments, it can be challenging. I just feel so lost as to causes, and symptoms, overwhelmed with what is what, and I go on and ignore it. I am starting to feel I may be ignoring the wrong things, "Symptoms", piling on like trash... Thats a good saying there Spotty, I have to say that to my next appointment, "Sorry my thermostat is not working", LOL. Thank you for the giggle...Your thoughts and prayers are so welcome, and the best soup for the soul, I send them big, and back to you, and all here. Be well friend, blessings and Love, Thestormy sunshine
Even though it was cooler last night I hardly slept for my feet burning and had to resort to my cool pad to put under my feet once again. So it seems the Amitriptyline which I started on 21st May, isn’t helping and I’ve left a message on the Rheumy helpline this morning to say so and to ask whether I should continue taking them as they are giving me side effects. So they haven’t helped to repair my thermostat and just leave me sleepy each morning and terribly constipated (sorry too much information!) 😂 But like the ‘Golden Girls’ we are all friends and confidants here. So we can tell each other anything and like they say ‘Thank you for being a friend!’ Always here for you Stormy. Give that gorgeous Storm a big hug and one from me too and I’m sure that will help you feel better. Love and hugs.🤗😘
Hi spotty, thank you for your encouragement, everyone is so kind, and I value this very much. My rantings, of frustration and defeet, seem so minor, as so many have much worse. I pray for us all. I would call your GP on the medication not helping. You seem to be only benefiting the side effects and that's no quality of life. Maybe do some on line reading of other options possible my dear friend. My feet and hands sweat cold from the moment I rise, till bed time. I have to change socks often and wear 2 pairs. But I take nothing for this.Bowl trubble, no one needs that, LOL.. So beef up on your good veggies, and fruits, with some veggie oils on you plates, that will help, As the good one once said, :An apple a day, keeps the Doctor away"! And that is true.... Storm , big fluffy, loving Hugs in bunches coming to you Spotty, and to all here, so kind... Be better my friend, much Love, thstormy sunshine Xxxx
Thanks for your concern when you are going through so much yourself Stormy. The Rheumy phoned me yesterday afternoon and has told me to come off the Amitriptyline and is writing to my GP to prescribe an alternative drug. He’s also arranging for a face to face appointment so he can do tests and assess my problem. So I’m glad I phoned the helpline. Sorry to hear about your feet and hands Stormy. 👎 Yes I eat loads of fruit and veg and a lot of roughage too in the form of bran added to everything, as well as Olive and flaxseed oils. But hopefully coming off Amitriptyline will help me get back to normal. 🤞 Loving the big fluffy hugs from Storm. SO comforting. And so are your kind and thoughtful words Stormy. Sending big hugs and lots of love, 🤗🤗🤗💝💝💝
Hi the storm
Sorry I have no advice, but you’re not alone and with that I have some understanding of your frustrations and how it brings you down. I haven’t a clue what causes so many of the symptoms, I don’t deal with temps either, today I’m in pain with swellings , sweltering hot high bp, white fingers and multi coloured toes Burning soleswith a banging headache and pain in my side 🤷♀️ The only saving grace is that it should pass at some point.
You have really been going through the mill by sound of things, and it will get you down, so good you’re here to speak about it and we support you , in your hard times and hope you start to feel better soon. I’m sure your friends here will have some good advice . Try not to let it get you down too much as that seems to create more of a rollercoaster but I know that’s easier said than done. Maybe something to watch or listen to , to relax your mind , sorry no good advice but best wishes 🙏 take care , stay strong 🤗x
Hello dear Stiff, You are one who is going through so much yourself, yet, you took the time to answer my calling, Bless you sweet heart. That alone lifts the spirits. I know we , we are frustrated, and in pain. Coming down to the line sometimes, like the "Twain", to tight to bare the weight, I have let the blues come in, because the other is frustrations, and such, I have been trying my on line visits with my Psychologist specialist, and admit to him, times are different in so many ways for all of us. I just feel like an old apple, that was left on the tree to rot. Doctors pass me around like that these days. I usually have patient waiting, but need comfort and help like everyone else, yet, that bell doesn't seem to toll for me. I so do appreciate all you do to help me, and you lift my spirits very much. I hope you feel better soon, I pray you have some relief, and cooler days, and I send you glory, love, peace, and joy to be yours in heart my friend.. Be well... Love, Thestormy sunshine.
Hi Storm, my BP is high but regulated most of the time by Amlodopine. My thermostat is also broken. My GP puts my BP down to obesity and my temperature fluctuations to menopause. I suppose both are credible but I literally pour with sweat even on a cold day, soaking my clothes, my hair. If I touch my husband he jumps and says it is almost like being burned. Then I start to shiver so bad my teeth are chattering. We have two big fans in the bedroom and I am often in and out of bed turning them on and off. You have every right to vent as you are going through so much I truly hope that you can get some help with your symptoms. Sending you big Cwtches ( Welsh hugs) and the hope of a better tomorrow xxx
Hi Cecily, For some reason, my body did not respond well to the Amlodipine, how high does you BP go, if I may ask? I did notice when the weather changes, my BP does to. I live in the AC during summer, and will get hot, and flaring, then soo very cold, like Doc said possible Vasoconstrictors, that then cause my BP to go high, uncontrollable. Chattering teeth all the way. Even after I eat sometimes, I get goose bumps. Checked my sugar levels and they are fine.. I guess I am not the worst off, I have all of you to keep me going, and I so very appreciate this. Reading of other friends here, it helps give clues into our own struggles. Thank you for making mine seem less.. Love your "Cwtches", they are always needed.. Be well, take care, keep those fans on, and much Love, Thestormy sunshine Xxx
My BP is rarely tested at the surgery because be,Jove it or not they say they have not got a big enough cuff?? The nurse does it in minutes so I think the GP just makes excuses to be honest. Just one more way that they let me know I am obese and therefore worthless. Sorry that sounded bitter and I really am not, just resigned. My usual BP on the Amlodipine is 150/76 but if I get an infection or a flare it has risen to 180/110. My neck gets hot, the top of my head feels pressured and I feel very hot and my heart leaps and plunged. I hope you did not think I minimised your illness ? I would not hurt you for the world. It is so important that our symptoms are validated. I agree that this place is safe and accepting and honestly I thank God that you are all here to let me know that I am not going mad, or a hypochondriac. Cuddle your beautiful Storm .I hope tomorrow is a better day for you xxx
Cecily, You are just the bomb, fine like good wine, just the way you are, and always will be. A fighter, like many of us, and our words do matter, even if our Doctors and GP's don't. We all are up on our bodies, and symptoms. I hope your BP stays lower to, mine goes in the similar manner. Sadly my weight is in the opposite direction, I have a very hard time keeping it up. I stand outside, I blow away. Nothing fits, The ER hospital Dr said at my last visit, if you go into cardiac arrest, there is not much to push on, I would crush those tiny bones. Well, that made my day.. But we go on, even just here, and sharing with information and so much joy, blessings and Love to you!!!
Bless you. I have been too thin although not for years now. I was given Complan and ProPlus 🤢🤢. I am 5 foot 8 and weighed six stone..probably the weight of one leg now lol I used chicken fillets because when I lay down my boobs disappeared. Now they disappear too, one under each armpit 😂😂. We have to laugh or we would cry right?Look after yourself Stormy, you bring joy and light and your sincerity and compassion brightens our days. Never change xxx
Hi Cecily, I can relate to a lot of what you described and I’m 65 on Sunday so definitely not menopausal and I’m not obese either. I think sometimes they just don’t know what causes these symptoms and jump on anything that is a possibility. How is the treadmill going? I hope you are keeping at it. You were doing SO well despite your painful and damaged knees. You are a real warrior! Keep going! Hugs 🤗🤗💝
I think you are doing brilliantly!👏🏻👏🏻 10.8 miles is a long way when your knees are in such a bad way. Good for you!👍🏻👍🏻 And you are building up the time you spend on the treadmill which is great. It shows you are getting fitter. Keep at it and do a mile for me while you are there. 😂 I’m feeling so tired and lethargic these days you are making me feel guilty. Take care! 🤗😘
Thank you so much. My hubby who is 9 years older than me takes the dogs out and walks about six miles a day. My 10.8 miles took me a whole month but it is 108 miles I had not done before this year. My aim is to add one minute a day next week tThe 25 minutes I'm doing now is at the capacity for my knees as they have a tendency to buckle. I was up all last night with severe pain and itching so today I am going to be kind to myself and just do 10 minutes. As long as I get on there daily and try that is the main thing. I fear the agitation, rashes and bladder coldness is an indicator of yet another UTI groan 😞xxx
Good plan Cecily.👍🏻👍🏻
Oh no, the dreaded UTI. 😫 I had it recurring for years - horrible thing. Now on prophylactic antibiotic (changed every 6 months) for the rest of my life.🤨 But at least it has prevented it recurring unless I use a public swimming pool. I think I’ve told you this before. Sorry, if I have - put it down to brain fog and old age. 😆 A friend was put on a prophylactic antibiotic for 2 years and then never had one again for many years and still only gets them very rarely. Would it be worth asking your GP or Urologist if you could try this?
Keep strong and battle on Cecily. Wishing you all the best. 🤗😘
Sadly that has been tried and had absolutely no effect on the number and severity of my infections Last time the Urologist said the only way to stop them was to remove the bladder because of the large diverticulum. I opted not to do that. At the moment I have used two weeks of the oestrogen pessaries and I have started taking Sea buckthorn capsules which someone here recommended. I am also taking triple strength cranberry tablets daily. I am definitely brewing something. Last night I could not control my temperature and veered from too hot to shivering, I itched and scratched, went out into the garden for air, my joints hurt my hands and feet were on fire and I felt severely agitated physically and y bladder felt cold. I ended up sitting up all night with a hot water bottle on my tummy and drinking mugs of hot tea. I went to bed and got back up four times. Today I have an under skin rash and am struggling to keep still.Usually with this type of agitation it means there is an infection brewing again. The Urologist will not see me spas I am apparently a challenge given y “ gross obesity” and she will not see me in clinic as I at a significant chance of catching Covid 19 because I am so “grossly obese”. If I am no better tomorrow I will call the surgery to get my 12 th course of antibiotics..groan xx
Oh dear Cecily, that is awful. I’m so sorry the prophylactic didn’t work for you. And you are trying so hard with the cranberry and buckthorn. But if it is an infection only an antibiotic will shift it. I was on one every month for over a year because it seemed as soon as I’d finished a course the infection returned. But I’m lucky the prophylactic is working for me. That is so miserable for you, I feel for you.
How downright rude and uncaring to tell you that you are grossly obese and a challenge. That is a disgrace. You have a warm and caring heart and you are trying your best to help yourself which they should be applauding. Keep doing what you are doing and someday you’ll surprise them and they’ll have to eat their words. 😉 In the meantime I hope you get the help you need for this current infection and I hope it doesn’t last long. 🙏🏻 Love and hugs 🤗😘
Trimethoprim is the antibiotic of choice for UTI but I have an allergy to it and it doesn’t work for you. Just shows how different we all are. Glad the Macrobid does the job for you. Do you use liquid Gaviscon whilst on it? It and bio yoghurt helps my stomach when on harsh drugs, but as I say we are all different. Thinking of you and praying the infection passes quickly. 🙏🏻 Take care 🤗😘
Sooooo sorry sweetie. I have comorbidity (61 confirmed 3 pending) sorry your HBP isn’t under control. I understand the frustration and concern when no reason can be found. I’ve had decades of testing with many of my conditions before finally getting diagnosed and treatment for some of them. All have no cure and many have treatment.
HBP is sometimes hard to pinpoint a cause.
I too experienced increased heart rate and blood pressure almost 5 decades ago in the beginning of my now mountain of diagnoses.
The only thing back then that helped was being in the A/C. Had to go to the mall to cool down back then.
64 years passed before getting my IEM-inherited erythromelalgia diagnosed which includes heat intolerance. It raises my BP and heart rate-HR causes burning and swelling plus salt intolerance.
Please don’t give up on seeking answers. Have faith that answer will come. I carried the labels of being crazy attention seeking liar faking etc. for decades. Now I have proof that all of those slandering doctors were WRONG.
I pray that you will find an answer as soon as possible.
Take care sweetie.
Much love to you.
Honeybug, you are a blessing, and such a strong force, I am minor compared to so many here, I know so much of our conditions and symptoms take years to conclude. I read many people here struggle for so long. My heart always goes out to them. I just don't want to become a statistic after the fact, so to speak. I know I am on to somethings with my Doctors, they just don't seem to have the hand or time to be detectives anymore. One more visit, one more defeat, Please do not get me wrong, I am trying with my best life, I never give up. I am a nag of sorts with Doctors, I speak well and long to them. There heads spin, one said to me, "to much information". Like you, and many others the proof is in the pudding, LOL. Honeybug, thank you so much for your interest, and encouragements, and caring posts, you really have life to share. Keep doing the greater good, I send many blessings ,prayers and Love to you.Xxx Thestormy sunshine
Hi Roarah, Thank you for being here, how are you doing? I have not had a full MRI of what? or an angiogram, thats a good question, who should I place this to? I did have a 24hr urine done, is there a difference? What kind of kidney test. The cardiologist did ultrasound of kidney's this year, he said it was fine, an urine possible contaminants, but other than that, they are good. I drink lots of liquids to flush them daily. I am really concerned about my BP, as the other symptoms seem to raise it alot. You have much more experience here, what do you think dear friend.. Lots of love to you, and peace,. Thestormy sunshine Xxxxxx
An mra is like an mri but looks specifically at arteries. There is a condition call fibromuscular dysplasia, FMD that is a non atherosclerosis thickening of arteries. It is represented by " a string of beeds" in mra or cta and can be seen through angiogram. Fmd often effects the arteries to the kidneys and sometimes the ICA and heart. Maybe ask your cardiologist about an mra of the head, chest and pelvis to look for any arterial blocks.
It is very common for BP to rise in high heat and humidity. The heart pumps faster to cool the skin. This is why feet swell more too. But it is an important issue to find something that works to control it. Stay cool my friend. Xo
Hi Roarah, you have great information. I am writing this down for my Cardiologist. Would FMD show up on a simple ultra sound of the abdomen, or CT with contrast , or stress test, or blood labs? I only ask because these are tests I did have done this year, earlier on. Only conclusions were a PVC of heart, and a cyst on my liver. You have peeked my interest very much . Thank you for your insight, and caring, your response mean much to me. With all you have gone threw,you could hold a degree ! Are there any symptoms associated with FMD, that could be overlooked by a simple testing? Working on my talking to the weather to give us all some just relief. LOL.. Be well Roarah, stay safe, looking for answers, again I so do appreciate you and everyone. Love, thestormy sunshine
Fmd may show on a ct with contrast but only if they are looking at arteries. It often, like in my case had no symptoms, I have it in my distal ica found as an incidental during my stroke work up. If it is in a kidney artery it does often cause elevated blood pressure. Good luck getting your BP down xo
You are funny D, that is a sweet way to say, no sun for me!!! Thanks for the giggle, I needed that, all of you good people are so lovely.. Same for me, I worshiped the sun for most of my life. As a child, we had the only pool in the neighborhood, so I had lots of friends, and so much fun. Then Having children, well, pools, and beaches with beach vacations for ever. I look at all my photos, and boy, I was so tan. Now, I am whiter then my clean floors, and so very pale. But, the sun doesn't want me anymore, nor I it. Don't let the sun go down on me, rings in my ears every summer. And wow is it hot this year. Ready to move me and Storm to Alaska, ha ha. It is a beautiful state. What kind of symptoms come to you from the sun if I may ask... Be well D, stay safe, all my blessings, and Love to you. Thestormy sunshine.Xxx
I’m not sure if my sun sensitivity is from meds or my unique configuration of illness but I burn quickly even with sunscreen, even to a point of small water blisters after 15-20mins and I get dizzy and winded in the heat like a drought stricken 🌺. I’ve been an athlete for decades and never had these problems, even rock climbing 🧗♀️ in the desert 🌵. Not anymore.