I had two stents approx six weeks ago. I have been diagnosed with CAS. I also have Fibromyalgia. I am exhausted. I just shake and almost vomit when I do the lightest bit of housework. Fibromyalgia is the main reason for my exhaustion plus the heart. I also have extreme back ache. My question is: should I go back to cardiologist? I am definitely not a complainer but life is extremely difficult at the moment.
Fibromyalgia and heart : I had two... - British Heart Fou...
Fibromyalgia and heart
Written by
Denva
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37 Replies
•
Hi Denva,
It's very difficult when you have something like fibromyalgia, alongside other conditions, to know what is causing the problem. My advice after walking the "which one is it line" for 4 years is to talk to your GP. Urgently. If you tell the receptionist you are calling in relation to your heart condition appointments will appear.
Look after yourself x
Thank you so much. 🥰
MilkfairyHeart Star
Hi Denva,
I am sorry you are facing the double whammy of living with two challenging health conditions at the same time.
I have lived with vasospastic angina for many years and I am often exhausted by the pain and lack of sleep.
Have you been offered Cardiac rehab?
It took me sometime to slowly build up my exercise capacity and stamina.
Your medication may need reviewing and I also suggest you contact your GP or Cardiologist.
Unfortunately Vasospastic angina is not well understood by many Cardiologists and it can be trial and error to get the best combination of medication that works best for you.
I hope you feel more at ease and access the support you need soon.
Hi Denva
Sounds like you’re really going through a hard time, I’ve also got fibromyalgia, so painful isn’t it, about 8 years ago diagnosed with coeliac disease, think bakeries smell the best in the world now I cannot have anything. Another health condition which has also turned my life upside down, which I’m struggling to deal with and now the heart spasms 🙄
So I feel your pain 🤗 you’re a strong person to have those conditions together, but like woodland..,,, says mention your heart it’s the quickest way to get seen and get checked over.
I’m a bit of a hypocrite saying that !!!!’
Look after yourself, several people on here have said ‘ be kind to yourself’ let us know how you get on 🤗
Hi Denva, so sorry you're having to cope with all this.
I have Valvula Heart Disease ,Angina, COPD and Asthma along with numerous other Health Problems.
Also have Chronic Fibromyalgia, which I myself feel is the worst thing to cope with .I am so exhausted all the time and like you I get the shakes..Fibro is the most horrible disease .You can't see it,but boy can you feel it. I call it the Devil's Disease, because the pain hurts like Hell.
2 years ago, at an appointment with my Cardiologist ,I told her that sometimes I can hardly move my legs because they are so heavy She said that one of the tablets that I was on was known for that type of side affect. I asked her if I could come off them or if she would change them.She told me that she couldn't do that, because my Heart wasn't strong enough to cope without them. 🤔 ❤.
I told her that my legs were very painful and she said " Well it's either your Heart or your Legs, it's your choice". HUH.
Well today I've decided to try and go without the Amlodipine and take a Low dose Magnesium tablet instead..
Go to your GP and tell them what's happening. Or you could ring up your Cardiologists Secretary and tell her that you need to make an appointment as soon as possible. Don't try to carry on as you are. I did get some advice from my Cardiologist. That's what you need to do..
Don't stop taking any of your medications without advice from your Doctor or your Cardologist.
I only came out of hospital on Saturday.
I had a Sludgy Gallbladder and Gallstones removed and they also done a double Hernia repair,also sorted out some Dilated Bile Ducts..I feel absolutely dreadful . But Hey, we have to move forward. Hope you feel better soon.
Look after yourself. 🤗 💐 x
Hi KB47
I hope you feel and get better soon.
Fibromyalgia is just an awful thing to have, so painful 😣
Hi Fluffybee. Thankyou for your kind words. Yes,Fibromyalgia is a horrible painful disease. Makes everything else worse You look after yourself 🤞🥵.
I find that repetitive things like hanging washing out with arms above your head or washing hair, really painful sensitive areas on your body and seem to feel pain do much more than you should.
Having that and a heart condition isn’t a great combination, really makes daily life hard work physically and mentally, fit both conditions.
You look after yourself also 😃
• in reply toFluffybee
Hmm 🤔, interesting FB, can you draw a distinction in pattern between the fibromyalgia & angina pain ?
Fluffybee• in reply to
Yes it’s completely different, it’s more of a feeling for me of doing to much and pulling muscles for part of it. The angina is very specific, to my upper chest, heaviness, breathless, and the GTN dies help, thank goodness !!
KB47• in reply to
Hmm ,sorry for interupting. But Fibromyalgia is nothing like Angina. They are both totally different. .Fibromyalgia pain is deep inside the muscles,sometimes you get like electric shocks going through you. You can have a High Sensitivity to Light ,heat ,cold, noise,smell and taste .There are numerous other health issues it can cause. It really is a horrendous disease to have. Angina is a specific pain where you get breathlessness and a feeling of heaviness in your chest,as if you have a weight on it. Sometimes you can have an attack while you're at rest. Its called Unstable Angina. Thats the kind that I have. Tbe pain can spread to your jaw,neck and your arm..🌈🍀💐
Oh my gosh. My problems pale in comparison. Do take care.
Hi Denva, thanks for your kind wishes. You know that I told you I was going to stop the Amlodipine. Well I did try, but I couldn't go without them. I was so out of breath, it was getting really hard to take a breath. So here I go again. I'm back on them..I thought that I'd let you know. 🤗
Hi Denva
We all have health conditions that we’re all worried and stressed about.
One thing is massive to a person, takes over their lives with the pain and worry of a heart condition, and other conditions besides.
It can all be so overwhelming with being diagnosed with something, the what if’s not knowing what’s around the corner, if or what treatment there is
I’ve always, because of my job, put myself in the life of the person who’s got whatever condition, mental or physical and try and see it through their eyes.
We’re all here to listen and help as much as we can on here, I see on here many people saying we’re a good bunch of listeners and try and help in anyway even just a good old rant.
Take care of yourself 🤗
Further to my first message I did go to the Dr. She went through all my meds to see whether they could be contributing to back pain. She did say however that I need to stay on them all. Yes, there is a difference with fibro and angina pain and my back problem is another species all together. I have arthritis and she feels that this could be the back pain. We actually ended up laughing because everything she said to me I said yes, I have that. Anyway I am to take pain killers every four hours and I hope that helps. One of the things to avoid is blaming everything on Fibromyalgia. Initially I did that with the angina pain and I am lucky that my doctor saw it for what it was. I feel so for you with the breathing. Before I had my stents my breathing was bad and now I frequently take lovely long breaths. Why? Because I can! Take care. Sending you lots of virtual hugs.
Hi Denva, only just read your message. Been sick all night, then today, back and forth to the Loo. I had a real bad day yesterday. I had the stitches taken out of my Tummy. That got my pain going again. The Fibromyalgia really gave me a hard time last night. I get so bloody fed up with it all. I was going to have 3 stents put in.but he tore my main blood vessel and I had a haemorrhage on the table.
Long Story. I'm really tired,but if I can, I'll. message you tomorrow and tell you what happened. Love & Hugs ❤ 🌈 💐 🤗
Oh my gosh. Saying sorry seems inadequate. I get IBS with Fibromyalgia. In fact you name it, I got it! So I do understand what you are going through with the Fibro but dealing with the other issues as well is simply horrendous. I so wish I could wave a magic wand and make it all go away for you. I do hope you have support. I am incredibly lucky. My children give me a lot of support. Love and hugs to you. ❤️❤️
Hi Denva,how are you today..I had a good 6 hours sleep last night. But that's only because I had no sleep the night before, because of vomiting up most of the night, and I took my sleeping tablets. I am so stiff this morning, can't hardly move, due to the Fibro I suppose. 🤔.????. I've got 2 Heart Valves that aren't working properly , but they can't find a Surgeon that is prepared to try and do a replacement, because they said that I wouldn't survive it. I've also got COPD,Asthma and the Angina. Also got a 16 cm Haitus Hernia. Diverticulitis ( Query Crones ). Got Rheumatoid Arthritis,. Osteoarthritis and Osteoporos. Have had bones taken out of both hands and one of my feet because of the Arthritis. My Orthopaedic surgeon wants to do a complete wrist replacement. But I've said No Thankyou, I've got enough to go on with. I'm gonna stick with the injections. I've had Fluid drained out of my groin, where it had leaked out of my left hip. At 1st they thought that I'd had a stroke,because I'd already had several TIAs in the past. But it was because of the Athritis. I'd been in a horrific car accident when I was 29 years old. I had spinal injuries, but it wasn't until years later that it was found out, just how bad it had affected my spine. As you know,I've had my Gallbladder and Gallstones removed and they repaired a double Hernia for me. Thats a couple of things out of the way. .Its a pity they couldn't do an operation on the bloody Fibro..Cut it out and get rid of it🗡🔪. Wouldn't that be Great. 🤗. On the day Prince Harry and Meghan got married, I was rushed into hospital by Ambulance because of a real bad Angina attack.The Paramedics were thinking along the lines of me having a Heart Attack. Now my Cardiologist wasn't on duty. So a different Cardiologist came to see me. They did a type of Scan that showed up I needed 3 stents. I DID tell them that they wasn't to go in my groin, because 2 years prior to this happening ,my own Cardiologist and myself had discussed whether or not I should have another angiogram. We decided against it because it's not without risks. They said that they could do the procedure in the inside of my right wrist. I thought, well okay. I was taken down to the room to have the procedure done. But the Cardiologist that I told I wasn't to have the procedure done in my groin wasn't even there. It was a young Scottish Lad called Dave. He tried 3 times to do it in my wrist, but he couldn't do it because he said that my blood vessels were calcified. The next thing I knew, he was going into my groin. I told him, " No you're not to go in my groin ". He didn't listen to me. The next thing I knew I had the most terrible pains in my right leg,my stomach and my back. Then I was soaking wet.I thought that I'd weed myself. But then all hell broke loose. The Nurses brought a step for him to stand up on .He was pushing pressure in my right groin. Ohhh. I can remember shouting at him. " Shit , get off me, you're hurting me ". He said " I'm sorry I can't, I have to stop the stem". Then I realized why I was so wet. I hadn't weed myself. It was my own blood. He had put a tear in the major blood vessel and I was actually haemorenging on the table.. I was put in something where I couldn't move at all. Was down there for 6 hours. They gave me so much Fentanyl and Morphine, I was getting as high as a kite. I was lieing flat on my back I couldn't move.. When I was eventually taken back to the ward, the Nurses could only lift my head 1 inch per hour. The young Lad that did the procedure came to see me several times and kept telling me how sorry he was. His Boss came to see me and was apologising. They were all very apologetic, but it was too bloody late then. I still have pain and nerve sensations in and around my groin because of what happened. I can remember 2 weeks later in Clinic. There was another Cardiologist there. It was only by chance that he heard what happened. He asked me if they stitched the tear, or even plugged it. I told him No nothing. His eyes went up into his head. We could see that he didn't like what was going on. I wish he was my Cardiologist. 3 months later we found out that Dave had been new when he did the procedure on me. He didn't even have anyone to supervise him , that was very wrong for a start. I have been sent for twice for another angiogram since that fiasco, but have turned them both down. When I get over this operation I'm going to get in touch with my Proper Cardiologist and see if he can help me. I have felt like sueing them for what they did to me. If I had agreed to the procedure in the groin, well anything can happen. But what's getting to me is that I actually told them Not too.. PHEW. I hope you can take in what I've been telling you. After all it was a long one. Love and Virtual Hugs to you. Hope you have a good day . .I'm glad you have support from your Children .❤ 🌈 💐 💕 x
I am so sorry. I cannot believe that you have had to deal with all of that. It is horrendous. And I hear you about the fibro. Regardless of everything you’ve been through the fibro is the most difficult. The desire to survive is strong. I haven’t heard any comment about it being too hard, life that is. You are obviously incredibly brave. You have had six hours sleep but Fibro never lets you feel refreshed. My flawed heart goes out to you. I do hope there are moments in your life that you can still enjoy. ❤️❤️
Hell yes you should sue 100%
This is disgusting treatment.
When having something like an angiogram its so weird as you are conscious yet not in control. Much less serious than your situation, but when I had mine they had the wrong notes and thought I was a man! I am not 🤦🏽♀️🤷🏻♀️ I told them I didn’t trust them and to get me out of there.
Eventually the Anaethetist calmed me down, got rid of the idiot with the wrong notes and someone else did the procedure with my actual notes. I did make an official complaint because they must learn from their mistakes.
I hope you feel better & strong enough to complain/sue soon.
Hi I had that horrendous experience with the angiogram 2 years this April. Do you know how long you have to put a n negligence claim in against them,, and if the Solicitor acting on my behalf could come to my house. I'm not well enough to go out, have been housebound for over 5 years due to pain and other medical problems. Lots of people have told me that I should sue them. .But I've been in and out of hospital so many times since then, I just couldn' be bothered. They knew what they did was wrong. Even the Cardiologist Consults came up on the ward to apologise to me. They don't normally do that..Thankyou for your help and advice. ❤ .x
Thankyou Denva, there have been times when I just wish that I wasn't here.
Sometimes the pain is so bad I just don't know what to do with myself.
But then I look at my Hubby and our 3 Son's who I love so much..Then I realise how lucky I am . We have 3 Sons👨👦👦, 4 Grandchildren 👨👩👧👧 and 9 👩👦👦👩👦👦👩👦👦Greatgrandchildren .In November our Granddaughter is going to give Birth to a little Boy. 👶 That'll make it 10 Greatgrandchildren.👩👦👩👦👩👦👩👦👩👦.
Our youngest Son is getting married in 3 weeks time . I'm praying 🙏 that I'll be well enough to go, even if it's just to see him and his Mrs take their Wedding Vows. That will make my day a Happy one,😋 even through the pain.😥.
Look after yourself Denva. ❤ 💕 x
KB47
You are an amazing woman!
I have been blown away by your courage, resilence and fortitude to manage to come through such an awful experience.
I really hope you manage to get your son's wedding. I have a feeling you will😊
Take care of yourself
Hi Milkfairy, you betcha. I'll make it, even if I have to take a double dose of the Diazepam tablets. 😉. When our Eldest Son got married, on the sole of his shoes I wrote the words HELP ME in white paint. I told the Vicar the week before the wedding what I was going to do. He laughed and said yes okay. When my Son and his Wife knelt down on the cushions in front of the altar, everyone just burst out laughing ,even the Vicar. .Oh it worked a treat. I didn't even tell my Hubby what I was gonna do, only the Vicar and myself knew. They all looked at me .I just said " What,why is everyone looking at me "..I tried to look innocent,but I couldn't keep it up. 😑😁But I will go to our youngest Sons Wedding 🤞. even though this time I will have to go in my wheelchair. I'd Love to be at the Birth of our 10 th Greatgrandchild in November. But I think that's pushing it a bit. I did tell her that I've got a nice thick stick for her to bite on during the Labour. She calls me Nana G or Gangsta Glo. I love her to bits. They didn't think that she would be able to have a Baby. She's got Polycystic Ovaries and a few other things going on. But Hey they've finally done it and the Baby is due on her Dad's Birthday November 10th. All our Son's were born in November. The 1st 2 were under 2 years old. Hard work,but Lovely. Oooh, our Eldest Son just rang me up and said, okay I'm going Mum. He's not well ,although he doesn't drink he's got an Enlarged Liver,that they are concerned about. He's Diabetic and has a Heart Valve problem. He said that he wasn't sure if he'd be well enough to make it. So I had a go at him .I said that if I can go, he can go. No if ands or butts... He don't like to disappoint anyone especially me. Aww, he's just made my day. Goodnight Godbless Milkfairy. Stay Safe and look after yourself. 🤞💕
I have both conditions too but I believe my fibromtalgia must be quite mild. Arthritis is exaggerated by it. BUT I really feel for you as you sound so much worse than me and I feel this is bad enough! Do talk to your GP and I don’t know if you’ve tried any complimentary therapies but your GP MIGHT indicate if something could help if they are a supporter of alternative medicine. Stay strong 👍🏼
Hi HHH2017, I've already spoken to my GP, but all they say is that they can't do anything else for me. They've told me that I've got so many health problems that one medication is interfering with the other. All of our good Doctors have left the Practice and the ones that are there now aren't very good.. I'm with Pain Management, the Consultant is going to ring me sometime in September. She wanted me to go in the hydrapool but my Cardiologist said No because the water is quite warm and that my Heart is too weak.I said that I was willing to try it;but they wouldn't allow it. I've had Depo Steroids Injections put in top and bottom of spine ,Acupuncture, ,Physiotherapists coming to the house. I was referred to the Mental Health because I've been so depressed. They referred me to a Pain Psycholologist. I've done mindfulness and meditation, but they really don't help. How can you detatch yourself from pain to do Mindfulness when the pain is so bad.I think it would help if I didn't have half of what I've got. If you could think of any alternative medicine would you please let me know. I'm changing my Doctors as soon as I can. Perhaps they could help me🤞I must say, you Guys and Gals are a real good help to me.If I didn't have you I'd be lost.. My Hubby is my Carer and my best friend, but I can't keep winging to him all the time. He's got enough to cope with, and he's not well himself. At least my stitches are out now ,so I should feel a bit more comfortable. I'll put a Post up on here after my Son's Wedding in 2 weeks time ,let you all know how it went. Gonna do a bit of mindfulness starting today. I'm also gonna be squeezing in ,IM GOING,IM GOING .See how it goes. 😊. Thanks for being in touch.👍x
Soooo hard 😞 A friend of mine swears by chinese medicine but I’ve not tried it myself🤷🏻♀️ Hope you find an excellent new GP who can really help.
Enjoy the wedding ❤️ and best of luck with everything.
We all look forward to hearing how you get on and its not whinging or complaining 😉
Thankyou Denva. I got another 2 weeks to go before the wedding. I tried my dress on that I intended wearing, I didn't even have to undo the zipper to get it on.It just fell on me I've lost so much weight. Will have to sort that out Pronto.
Will let you all know how things go..
Thankyou for your good wishes. Hope you and your Children have a lovely day. ❤💐.Glo x
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