My experience with fibromyalgia ( newbie here)

Hi , I'm new to this site. Just feel I need to research on how other people get through living with fibromyalgia. It started with me a few years back with really bad tiredness and very weak. Then in my 3rd pregnancy I woke up one morning with stiffness and aching muscles and it went on from there. My dad passed away the previous 2 years before this. Doctor did bloods and found elevated ESR levels so put me on steroids and told me it was polymyalgia. Got checked for bone cancer which was clear , then seen a reumatologist who said it sounded like fibromyalgia. Got Naproxen for pain which I'm not taking because they are a form of ibuprofen and I don't think it's good to be taking 3 a day of. Symptoms are very bad at the moment with leg spasms and the feeling that I have climbed a mountain when I haven't. Pelvic pain, headaches pains in feet, ankles hands, wrists, shoulders and arms. Along with stiffness, weakness, nausea and fatigue. I'm really fed up with it as I'm a mum of 3 and struggle so much to do my daily routine. Feel as though I'm constantly letting my kids down by not being well. Waiting on a doctors appointment in a couple of weeks time to see if I can get anything that can help. 😢

13 Replies

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  • Hi Donnamca welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are. I have Polymyalgia and Fibromyalgia along with a few other ailments, so i feel your pain my friend. I would say I'm lucky as my 3 girls are grown up but now I have the grandchildren lol

    You really do need to go to your gp because there is lots they can help you with. Medication. Pain clinic, Alternative therapies prove a great help for Fibro sufferers, hydro pool, even swimming if you can muster the energy.

    Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

    fmauk.org

    Peace, luv n light

    Jan xx

  • Thank you so much for your reply Janet28, 30 years is a long time, I'm sure that has been very difficult. I will have a look at that site' thank you and take care, Donna xx

  • Hi Donnamca , and welcome to our friendly site, you'll find lots helpful advice on here, first of all I don't know how you manage to look after three kids with this horrible disease, you deserve a medal !!!!!! If your ESR levels are raised it shows there's inflammation in the blood, I have RA so have regular blood tests, and steroids don't work on fybro as its not caused by inflammation, so there must be something else going on as well as fibro, so you could have fibro as well as polymalgia, I have RA, osteoarthritis as well as fibro so it's possible to have several things going on, fybro is a different sort of pain and fatigue from the others, did the rheumatologist agree with the Drs diagnosis of polymalgia, I'd have a chat with your Dr and see exactly what's going on,. Good luck

  • Hi there, thanks so much for your reply, yea it can be tough going with kids, especially getting ready to leave the house for school etc. Military operation, it takes me a while to free up in the morning so making packed lunches and breaks can be a task. My ESR levels where raised but after taking a low dose of steroids for 3 months, they returned to normal. That was a year ago, the pain and fatigue are still there. I've developed more symptoms since then like restless legs and muscle spasms and lots more headaches, blurred vision also. The doctor said at the time my ESR levels were raised that it was polymalgia. The steroids settled my bloods down and haven't had any bother since, when I asked what it could have been that caused my ESR levels to rise the doctor said I maybe had some sort of viral infection. I had to wait 6 months before seeing the rheumatologist and by that time my ESR levels were back to normal so he just said that all other areas had been covered and from what I was telling him he said it sounded very like fibromyalgia to him. I have went through times when pain and weakness has been more settled and just maybe had slight stiffness but I never seem to get a break where I feel well, I have always suffered from headaches. My really bad days were just that, 1 -2 days. Now my really bad days last for a full week going on 2. Trying to figure out foods that cause the flares. Definitely the days following increased sugar in my diet I find that I'm worse. Will see what GP has to say tomorrow, all the very best and take care, Donna

  • I am in great pain my fibromyalgiais getting worse, I take many tablets I'm on the highest strength of tablets for the pain so next step is hospitals pain clinic. I also have osteoarthritis, bad asthma and IBS, now I'm waiting for results of ct scan as I'm suffering with painful tummy and groin. I will try any pain killer to feel better. I hope you find something that will make you feel better my heart goes out to you and your family.

  • Thanks for the reply, sounds terrible what you're going through, I'm scared of starting tablets because they can cause that many other side effects. I used to just listen a to the doctor without asking about long term effects of tablets. I have lived with headaches and ate Over the counter ibuprofen every day because they were the only painkillers that would respond to my headaches. Now I have learned that they can cause gastritis if used for a long period of time, which means stomach damage that then causes other problems. All 3 of my pregnancys I was unable to take ibuprofen so that learned me to deal with my headaches without them and from then I try to keep them for bad headaches. I know you have to weigh these things up. Hope you get sorted soon, I'm going to go down the road of medication very slowly, its all very mind boggling. Take care, Donna

  • Read up on the meds and talk to your Dr. Good luck hope you get help asap

  • I have naproxen and from august to November I took them due to the level of pain I was, then gradually weaned myself off them and now just take paracetamol. However they helped my body and brain have a break from the pain which it so needed.xxxx

  • Hi , thanks for your reply, that sounds like a good idea, using them to give your body and brain a break. And great that you were able to get off them again. I have taken them on a once off with co-codamol 8/500 or even 1paracetmol an 1cocodomal because I don't like the woozy sinking feeling I get with co-codamol. Didn't like the thought of taking them 3 times a day incase of side effects but always in the back of my head though if they can be taken like that on a once off. Take care, Donna xxx

  • Hello and welcome

    Welcome to our lovely forum.

    I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years agorgTake a look at the home page for lots of useful information especially in pinned post and also on site below

    fmauk.org

    Good luck on your journey

  • Sorry to hear you are in such pain. I can relate to what you say as I feel similar. However my children are now 18 which makes things easier (I have twin boys) and now I get to rest a lot more than I used to when they were younger. I think growing up with a sick mum has taught them things that other kids don't learn - like empathy and how to care for people. And I was able to give them something very valuable - my time - they enjoyed those days in bed reading stories during the holidays! But I know how tough it can be and I'm sorry for where you are at right now with 3 young ones.

    At the moment I cope with the pain with a mixture of approaches:

    I try to pace myself with varying activities and rest.

    I take Nortriptyline 10mg at night, an antidepressant whcih helps me sleep and reduces the burning pains and nerve pains.

    I take 5-10mg Citalopram every morning which is another antidepressant which helps with the acheyness and keeps my mood more stable.

    I distract myself on bad days with films and box sets on Netflix so that I do go down in a spiral of negative thoughts.

    I take painkillers when I need them - paracetamol most days and on bad days I bring out the big guns like Tramodol.

    I take time out for myself when I need to and have learned to ask for help from my husband and kids around the house.

    I have found out that I have multiple food sensitivities so I eliminated those foods and found a degree of improvement in pain levels and energy levels.

    I take supplements which seem to help and I see a herbalist.

    A warm bath every night with epsom salts (or a magnesium spray afterwards) seems to help with the sore muscles and calm my nervous system before bed.

    We're all different and unfortunately there's no formula for a cure right now. But I think you'll find that people are supportive on this site and share their own insights. It has taken me years to try all the things that I've found have helped me, but it's worth trying things out. Good luck and keep sharing your journey with us.

  • Hello and a warm welcome to our friendly fibro forum where you can get help, understanding, support and information.

    If your esr is raised that is not suggestive of fibro but of inflammation, I suggest you go back to your doctor for further tests.

    Looking forward to seeing you around the forum.

    Kay

  • Hi Donnamca

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read of your suffering and struggling, and personally speaking (without my FMA UK hat on) I would query your diagnosis as an elevated ESR would point more towards and inflammatory illness, and Fibro is not an inflammatory illness. I have pasted an excerpt below from the peer reviewed *Lab Tests:

    *The ESR is helpful in diagnosing two specific inflammatory diseases, temporal arteritis and polymyalgia rheumatica. A high ESR is one of the main test results used to confirm the diagnosis. It is also used to monitor disease activity and response to therapy in both of these diseases.

    What I would say, is that Naproxen is an NSAID medication and is used to treat inflammatory diseases. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

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