Recently diagnosed, need help

Hi, I have recently been diagnosed with fibro, I also have hypothyroidism. I was wondering if anyone had any good strategies that halpern them, also any good pain Medsbased my doctor just suggested paracetamol which doesn't even touch my leg and back pain.

I was also wondering if anyone else had really bad pins and needle like pain in their hands and especially feet. I can't walk sometimes it gets that bad.

Thanks in advance.

15 Replies

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  • Morning I also have hypothyroidism. and suffered with your symptoms. I take depression meds, that helps a bit, and was taking Morphine, which am coming off cos of side effects. I find parectemol helps a bit to take edge off, might be cos I am using it with antidepressants. But still in lots of horrid pain. Ah and I have just discovered a hot water bottle again. xx

  • Thanks, I do love my hot water bottle 😊

  • Hi Serendipity_28

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read this and I was wondering if there was a different doctor at your surgery who you could discuss alternative medications with? If not, you could always pop along to your local walk-in centre and talk to them about your pain?

    As for your ''pins and needles,'' I would get this checked out just to rule out other medical conditions my friend. I have pasted you a link to the *NHS Choices cache on this issue below:

    Pins and Needles:

    nhs.uk/conditions/Pins-and-...

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Hi, thanks those websites have been very useful. I have already seen 3 doctors, on my forth now (well will be on friday). One of them Said there was nothing from with and it's all in my head!

  • Some doctors are unbelievable! Good luck my friend.

  • Hi, in my personal opinion paracetamol will not be an effective pain relief. As for the issues with hands and feet you may want to look up peripheral neuropathy and see if you identify with it. I have something called Restless Leg Syndrome, which often comes with Fibro. Maybe look this up too. My GP has prescribed 5mg of diazipam twice daily and this has greatly helped reduce it. I also take a magnesium supplement and apply magnesium oil to sore areas which helps greatly.

    Other options you could discuss with your Dr are co codymol, Tramadol, MST ( slow release morphine tablets) or oramorph. But like Uggy has mentioned there are side effects to the stronger Meds and I too am reducing the morphine.

  • Hi, I will mention those to my doctor. Thanks, i am clueless with pain Meds and things so this is really Helpful. Thanks again.

  • Along side seeing a more understanding doctor who should explain your pains and pins and needles, having had hypothyroidism for 29 years, would suggest look at your diet, gluten and dairy , an alternative practitioner who is very familiar with your problem , Reducing stress in your life and being very very kind to yourself, I feel is so important. Take care and good luck on your health journey.

  • Hi, I already follow a dairy and gluten free diet which had helped massively, especially with weight gain. I wasn't sure whether to push to be referred to an endo?

  • I’m sorry to hear that you have been given a fibro diagnosis and no further support, when you already have hypothyroidism. I was diagnosed with Chronic Fatigue Syndrome in similar circumstances, although my main symptom was pain, and I know how depressing and debilitating this can be.

    Luckily, my hypothyroidism is now optimally treated, my vitamin D levels are replete and I am completely well.

    It is possible that your hypothyroidism is not optimally treated. This is very common indeed and it does mean that symptoms continue and even get worse, when an increase in thyroxine dose or the addition of liothyronine could relieve them completely.

    You will get good advice from the knowledgeable people on the ThyroidUK forum here on Health Unlocked. May I recommend that you ask your GP for a print out of your blood test results, with the reference ranges and then post on that forum. They will be able to tell you whether you are under-treated and advise you generally.

    Have you had your antibodies tested? Do you know whether your hypothyroidism is auto immune? I’m asking this because pins and needles is a classic symptom of vitamin B12 deficiency or pernicious anaemia, which often goes hand in hand with auto-immune hypothyroidism. Have you had your B12 tested? There is also a forum on Health Unlocked for pernicious anaemia and B12 deficiency and people on there who can help you.

    Also, if you have auto-immune hypothyroidism, a gluten, and in some cases, dairy free diet can help to damp down the antibody attacks and make symptoms more stable.

    Finally, has your vitamin D been checked? Widespread pain and fatigue are often symptoms of a deficiency and it’s that time of year when we have had no sun.

    I apologise for asking so many questions, but it does sound to me as if it could be possible for you to feel much better than you do now, although experience tells me that you would have to commit to outing the work in yourself and stick at it, which is not easy when you are not feeling well.

    Please feel free to send me a personal message if you would like to.

    Good luck!

  • Hi, I am on the thyroid UK Forum already and they are very helpful. I recently had my levothyroxin increased to 100mcg daily but this hasn't d3creased my symptoms at all. I hasn't had my antibodies tested, should I request this? As for B12, I just had this tested and it came back as 419 so my doctor wasn't interested and said this was fine but I have seen that under 500 could still give you symptoms? My Vit D is low but that's been low for 2 years and I take over the counter tablets for this so my doctor is happy with it being low.finally I do already follow gluten and diary free diet which helps my hypothyroid a lot, especially the weight gain.

  • Hi Serendipity_28

    Welcome to our friendly fibro forum where you can get advice, support, understanding and information, along with a chuckle or two to lighten the day.

    Ask your doc for a prescription for your Vit D. Having a low level for more than two years is not good enough, you need to replace the amount you have lost. Low levels also cause an increase in bone pain.

    If you have a prescription you will get it free because of your hypothyroidism so that should save you a bit of money too.

    Kay

  • Welcome Serendipity_28

    I endorse much of other replies. Painkillers?

    There is a huge range of meds. What you should get is a Pain Management Clinic appointment. If the GP you saw was unhelpful go and see another and/or see practice manager.

    Another point support. This forum is good. There are physical support groups see the link Ken left. At groups you can hear quickly about what is going on in your area viz hospital consultants ,pain management or physio if available.

    I personally use pregabelin, codiene, quinine(for restless leg/spasms), also on prescription are Versatis pain patches (lidnocaine). All of my meds came from going to consultant Rheumatologist.

  • Hi, i had a quick look at those links and they were helpful. Thanks.

  • It’s not vital to have your antibodies tested, but it’s useful to know. 90% of people with hypothyroidism do have the auto-immune sort. However, there’s always a catch and in this case it’s that the NHS usually only tests TPO antibodies, although there are also Tg antibodies and you can have either independently or both together. This means that the NHS test won’t pick up someone who only has Tg antibodies.

    419 is a bit low for B12, but wouldn’t be of interest to your average doctor. You need to raise that level though, particularly in view of the pins and needles. Many of us use Jarrow sublingual lozenges, which you can easily buy from Amazon. They are not hugely expensive, but they are very effective.

    Your GP should not be happy with your vitamin D being low, particularly when low levels of vitamin D are a major cause of pain! Also vitamin D is fat soluble, so tablets don’t work well and you really need softgels. Again, have a look on Amazon at brands like Solgar, Jarrow and Doctor’s Best. 5,000iu a day is a reasonable dose while you’re raising your levels and you should be aiming to get it up to around 100.

    So, you should be aiming for: TSH around 1 or perhaps a bit lower, FT4 in the top quarter of the reference range, FT3 the same, B12 over 500 and hopefully nearer 1,000, vitamin D around 100, folate towards the top of the range.

    If you can achieve that, I can almost guarantee that you will feel better.

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