Newly diagnosed

Hi everyone, for about 7 months now I've been feeling completely ill and my doctor couldn't figure out why. After many blood test she seen that I was ANA positive and sent me to a Rheumatologist, where this doctor did test for lupus and RA etc. where these test came back completely negative and I was told I do not have any of that. Now I'm being told that it's fibromyalgia and to go back for treatment. My biggest symptoms are the joint pain, foggy head and extreme fatigue. I was just wondering if anyone else feels like this. It's kind of like having the flu everyday. If so how were you treated? Any advice on what meds worked for you. I only ask this way I know what to look forward to in my next appointment.   

13 Replies

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  • Hi Whelp529 

    What you are describing are common symptoms of Fibromyalgia.  I do not know what you know about this condition, so please forgive me if I tell you anything you already know.

    There is no cure for Fibromyalgia but it can be managed in a variety of ways.  Everyone who has Fibro suffers with it in a very different way to everyone else.  Basically it is tailor made to each person.

    With regard to medication again what works for me, may not only not work for you, but could potentially make you very ill. 

    You should discuss with your GP what medication you need.  He or she will know what is commonly prescribed for Fibro.

    As we all suffer with Fibro from someone who has aches and pains every day and carry on their usual lives, to people who are bed ridden with it, it is very hard to determine what treatment you need.

    Due to this vast difference this is the reason why it is best not to discuss medications on the forum, as we are not medically trained.

    Many of the meds prescribed for Fibro are extremely strong and many people have such bad side effects they cannot cope with them.  It is best to try one medication at a time so that you know what is or is not working for you.

    It can take some time to find out what is best for you personally, so you do need to be patient where meds are concerned.

    If you have a look on our mother site fmauk.org you will find lots of interesting information regarding Fibro.

    Your Rheumatologist will decide whether or not you have Fibro and if you to have it, he will probably prescribe you some medication there and then.

    Until you actually have a diagnosis it is probably best not to look too deeply into Fibro for now.

    Fibromyalgia is a very complex condition and the treatment you need will be dependant upon how badly it affects you.

    I very much hope that has helped and answered some of your questions.

    Good luck at your appointment.

    Wishing you all the very best

    Lu x

    Admin Volunteer

  • Welcome to the site. I see that Lu has given you what you need for now and so i will just say hello.  :)

    Sue 

  • Welcome to the forum.

    It all depends on what you already know of fibro. Ultimately the thing to remember about fibro is that it can be lived with but you have to listen to your body, otherwise you are going to cause yourself problems. 

    Medications and such like as unique to the person as fibro is. There are standard meds which docs prescribe to treat fibro but getting the right combination is important and that will be unique to you. 

    It will take time to get things in order and you are going to have good and bad days, but improvement is possible. Again listen to your body and what it tells you, don't be ashamed or afraid to say no to things if you don't feel up to it, pushing yourself only harms you no-one else.

    Feel free to ask questions and hopefully someone on here will be able to provide you with some answers or point you in the right direction.

  • Welcome, Glad your here! !! It's hard to tell you about meds as we are all different.I take meds for other things as well ...slot of us do.I wish you the very best. Please stick around the fun will start anytime.Peck☺

  • I would just like to say welcome to the site.  Others have already given you marvellous info. and links and good luck with whatever meds. you decide to try.

    One thing I would say is if you don't learn to pace yourself th fatigue can be awful.  It is best to stop before you get too tired and honestly it is an art form to learn this.  I am stressing this as I am saying do as I say not as I do as I have just done too much in the garden as the weather is delightful here and I bought some plants yesterday.  I did the same yesterday and ended up in bed in agony and having to take extra meds. and pain patches, silly me I should know better by now.

    Look forward to your future posts and let us know how you get on at your next appt. X

  • All the best Whelp...take it easy, you will learn to manage your fibro in time...accept the changes that you will defo have to face...but know that friends here know exactly what you are facing, and that lthere is life with Fibro....hugs x

  • Welcome!

    There is  a wealth of information on this forum.

    as suggested mother web fmauk.org has link etc and group info .

    Support groups are self governing but associated with Fibro Action.

    It is an area of help some people enjoy being involved .Meeting face to face maybe emotional but those are good emotions!

    You are not alone!

  • I agree with all advice you have been given but I might add you take notice of your diet as in my case, I have a sweet tooth and eventually found that cutting out all but essential sweet things such as Cakes, chocolates, biscuits. Etc., has really helped.   Hope this might help.

  • Hi Whelp529

    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 can see that you have been given some wonderful information and replies so I will genuinely and sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you everyone! I didn't expect such a big response and it feels great to know I'm not alone. I see my rheumatologist next week to discuss treatment. It's hard to feel like your sick every single day. As a mom of a 3 year old I feel like I let him down everyday because of not feeling well. I'm just praying that the treatment plan my doctor has for me will help me in some way. As for my diet I'm gluten and dairy sensitive so my diet is actually good. So I don't think there is much I can change there because it's already hard to find food lol just my biggest problems are the foggy head, and dizziness and the fatigue is sooo bad, I even nap with my 3 year old and still doesn't help ): I do have joint pain but it's gotten to the point where I'm used to it being there and if it gets bad I just take advil and that's it. I was given Alazopram for anxiety but was told to only take it when it's really bad and I haven't had it too bad so I haven't taken it in months. But other than that hopefully my Rheumy can figure out something for me. I just want to thank everyone for the great advice (:

  • Hi and welcome to the forum I am newly diagnosed and it takes time to get your head around the vast symptoms and pain from the condition and as others have said it affects people differently and people have different levels of pain but everyone is so friendly and caring on the forum and it's good to know we are not alone hope you get the help and support you need all the best Trina

  • Hi

    Sorry to hear you've been told you've got fibro and are suffering.

    I can see others have given you advice and web pages etc.

    All I can say is that there are many different symptoms and not everyone suffers exactly the same.

    You should get help from your dr, as nhs actually have a web page on fibro. The point being is that it's recognised on the site. That page actually helped me find this site. Which has been a great help and support!

    You might have to do a bit of reading up on fibro yourself, as many GPs don't seem that clued up on it. 

    If your dr isn't helping much ask to see a consultant, as they can give you stronger drugs. I can't suggest drugs, as I've had bad reactions to some that others have found helpful, it seems a personal thing.

    Trying to pace yourself and to learn you can't do what you used to is important. I've been told that relaxation is important in dealing with it.

    Extra vits, like vit d might help. Hemp tablets? Hemp ha schemicals in that marijuana has in, that's supposed to help, I take them and think it helps me to relax a bit. Gentle massage may help?

    I'm sure you will find the support from the lovely kind fellow sufferers on this sight very helpful and when you're feeling sad and alone, there's always someone to help you and make you smile.

    Good luck and best wishes.

  • Hi, I am sorry to hear of this i was told last week i have Fibromyalgia from my Rheumatologist after several years of feeling unwell and and being in server pain in places i had all the tests done as well but same as yourself was negative but that does not help the way you feel.

    All the test showed for me was that i have cysts on my kidneys which cause me problems with urine infections a lot at the moment all my pain medication has being codine, paracetamol, & Morphine as my pain has being ex stream. I get the pain in my joints and head and as for memory i have good days and bad days, there are sometimes when i totally forget how to spell or even tell someone something so i would say i defo have foggy head also the pain can get that bad when i cant even bare to be touched.

    Can anyone help me with advise on this and how to cope as i feel i am all alone

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