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Newly diagnosed and feeling lost

Posted , 7 users are following.

jamierose
jamierose

Hi im 25 and after a long up hill struggle i finally got a diagnosis. Though after putting on smiles for my family and telling them "im fine" i find it couldnt be further from the truth. My doctors have little idea of how to treat this on a management scale. Theres so much information on what works that shifting through it is stressful and honestly with all my added fibro symptoms stress is one i could do without. So im asking here in one collective place, does anyone have any information on what works? Pain management? Symptom relief. Depression and anxiety relief. Ibs management. Homeopathic or otherwise, any gudience would be appreciated.

1 like, 16 replies

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  • janet26165
    janet26165 jamierose

    Posted

    Hi Jamierose.

    Sorry to hear you had a long wait for your diagnosis.

    Unfortunately with fibro nothing is straight forward, drugs that work for one person may not work for someone else. I personally take, gabapentin for pain, etodolac for inflammation, citalopram for depression, omeprazole to protect my stomach and a few others. I have also had CBT (cognitive behavioural therapy).

    Other people on here will also let you know what works for them. A lot with fibro is trial and error.

    Anyway welcome to the fibro club and always remember that you are not alone in this fight and there are many people on this forum you can help or even reply to you if your having a bad day.

    Take care and gentle hugs 😊 x

  • kaz_40
    kaz_40 jamierose

    Posted

    Morning Jamierose welcome to the forum. I too had a long wait to be  diagnosed 10 years, some on her its taken longer than that.fibro is very much a learning curve for us all, and its trial error with fibro. this condition affects us all differently also the severity of it differes from person to person. where tablets are concerned the dr will prescribe pain relief, you may find you might go through a few until you find the right one that suits you. your gp could send you to a pain clinic, also for cbt  where I live we are offered 12 weeks free acupuncture and also hydrotheray for so many weeks at our local hospital. also see if their is a local support group in your area. Im unable to take pain relief as Im alergic opoids. so I use hot waterbottles and wheat bags. Your gp can also prescribe something for the depression. I would sujest getting as many aids as you can to help you eg walking stick walking frame etc also as much support as you can. with fibro you go through different stages 1 is denial 2 grieving for the person/life you once had. 3 anger 4 acceptance. stress worry doesnt help our condition at all trying not to stress worry is easier said than done. finding things to focus on also helps whether its readiing watching the tele, on laptop anything to keep your mind off fibro. its taking 1 day at a time and getting through that day as best you can. We all have at some point put brave faces on, and tried hideing how we are really feeling, but that doesnt aways help us. so what I do if some one ask how I am is put it on a scale of 1-5  5 being in so much pain your rolling round the bed in agony.we all try help support each other on this site so dont ever feel your on your own, just be yourself if you want to rant do so we have all been their take care gentle hugsmile
  • christine26761
    christine26761 jamierose

    Posted

    Hiya Jamierose...firstly welcome to this site, we all have Fibro some for years before finaly a diagnosis..mine was 10years then I have had it for 20 years after diagnosis...and you quite right it can be very overwhelming, there is just sooo much to research...I can only give you what I personally do, we all have Fibro, but our symtoms vary sooo much as does our medication..what works well for one dosent work at all for another , sometimes the side effects are soo bad they have to stop taking them...here we go:Jamierose...hope some of it helps...be blessed.:-) xxx

    Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...16yrs down the track..have to be woken up in the morning..but once up and about I'm just fine.....when I was first on them I was like a zombie..but it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx

    This was tajen of a site..

    Amithriptilyne .  is a Nerve-pain blocker..with sleep assistance and minor anti-depressant)..

     

    • deb97936
      deb97936 christine26761

      Posted

      Just a question Christine   ... in regards to yourself taking the Amithriptilyne, has it enabled you to be able to cope working and cope better at home to??  I am assuming you either work or have worked whilst taking the Amithriptilyne?  (Please forgive me if I'm wrong)
    • christine26761
      christine26761 deb97936

      Posted

      It gives me a real quality of life..I haven't worked for years, I was medically retired in the 90's...dye to many issues, but it needed up all being from Fibro, just didn't know it then..I worked for the government, so was rigorously tested befire they retired me..but taking it would never have stop me from driving..doing lots of voluntary work mainly on the computer..so I reckon it wouldn't stop me from working,,if I had been given it then I would have bee.able  to keep working... Taking .it makes it possible for me to function well throughout the day, the sleep I get really helps me to cope with any probs that Fibro throws my way the next day.. Hooe it helps..be blessed, have a lovely day deb..::-) xxxx
    • bronwyn97278
      bronwyn97278 christine26761

      Posted

      Hi Christine and Deb/.others; I really agree with what Christine says  re the Amitriptylline.....to me it is one of two drugs/meds that I KNOW is my saving grace...25mgms - 40mgms (depending on how muscles my muscles are hurting)....and I Think the maximum dose is 70mgms.....and the other being Gapentin...this I take 2 x 400 mgms a day....and this too, can be taken in larger doses.....but when starting on these meds, you may find that 15/20 mgms may be enought, and 400 mgsm of Gabapentin is enought, and when body gets used to having these in system, then up the doses gradually until you find the required dose that your pain levels require........and it actually surprises me how others havn't trialed it  .....yes I know some have reactions to drugs, and there are other reasons;  but for those who can tolerate drugs with no allergic reactions, I Really recommend taking same.........(yes I did feel spaced out a bit on the original taking of Amitriptylline...10mgms..  which was only  for about  2 weeks ??     .but persisted, and am glad that I did)........Bron
  • christine26761
    christine26761 jamierose

    Posted

    I forgot to mention..this is very important..being...STRESSLESS IS AN INCREDIBLE KEY TO LIVING WITH FIBRO...xx
    • diagnosisisalie
      diagnosisisalie christine26761

      Posted

      I know that statement is true, but exactly how do uyou do it. THE RA diagnosed me, looke at me and said take two days off and rest, , um I am not making the money that RS makes and there are endless responsibiliies for me daily and at times hourly. No,I have to accept the stress and move with tears, breathing anf praying.
    • jamierose
      jamierose christine26761

      Posted

      Thankyou flr the information above it give me some oltions and something to discuss with my doctor. Unfortunetly stressless doesnt happen in my house i have a soon to be seven yeah old woth adhd and a five year old diva. Most days are manic! But stressless isnthe dream smile
    • christine26761
      christine26761 diagnosisisalie

      Posted

      Feeling very sad for you right now diagnosisalie, it is easier said than done I know..I've been there in the first years..wish I had some words that would help and comfort you...keep praying, I will..be blessed.:-) xxx
    • bronwyn97278
      bronwyn97278 jamierose

      Posted

      Hi jamierose;  please tell me to "but out", if I step on sensitive ground......but do really feel and understand where you are at with trying "to be stress free" with your children...not just the age group, but with one who has ADHD......I am wondering how well treated this child is, for you to Even Attempt to have some "you" time, will really depend on how much help you have with your children?    Do you feel that your child with ADHD is adequately medicated (even both  children  would benefit from CBT/ or a  Therapy that deals with "the Reward System for Good Behaviour".)....I do realize/think that what you called "a Diva", may be reacting this way in relation to the other child and their inability to be Relaxed/self entertained, and the continual attention that both of your children are demanding from you, will be adding fuel to the other fire of  your Fibro......you have a lot more stressors than I do........I am actually saying, that besides the treatment that you need (whether it be meds/herbal/massages/physio), I feel that if the issue of your children can be bettered in any way, this may give you the room for your self-care?????.......you asked in the beginning for Any ideas that may help you......and after reading the above input, I now realize that what works for me, will not be suitable for you, with 2 very needy children......perhaps something that I find that decreases my stress levels, is the vitamins B12 Executive Stress tabs.....they help me to Relax/destress, and you probably are  not game to take anything that may make you "go into a Deep sleep" at night, due to your young children, but if you feel that a mild sedative (instead of an anti-depressant) would allow you to get some sleep, and still able to wake up if needed......do you think that with the added vitamins (including the BStress), and a sedative, could be a start......and for your pain, you may need something like I take as in Oxycodeine Slow Release (and yes it is an opiod..but if you take the other pain relievers, they will make you very sleepy).....I also feel that the LDN (Low Dose Naltrexone), is another way for Pain Relief, as it, too, is a Nerve Blocker, but Don't think it would make you as sleepy as some of the other meds that have been suggested????   You also said that you "don't like to tell your family how you are Really feeling....this I also went through for Many years, but have now learn't that It Is A Necessity to say if you are having a Bad Day, that you Would love some  Help, and if you do have a supportive family, let them help as I feel that you would do same for them if the roles were revesed.......   Please let me know what you feel re this, as I really feel for you, as you Do have a lot to deal with...................Bronwink
  • Bee70
    Bee70 jamierose

    Posted

    Hi Jamierose

    I know how you feel.  I have been suffering for over 20yrs and only diagnosed with fibro Aug 2014. Since finding out I have Fibro, I have had CBT (Cognitive Behaviour Therapy) I particularly found this very helpful with the mindfulness approach and the understanding that we have the right to say NO when we can't do something or helping others when one is feeling so low themselves.  It made me more of a confident person.  I am not good with meds, as had years of taking them and not helping me in any way. So I don't take meds from GP.  I have tried various other treatments over the years, such as reflexology, acupuncture, seen a chiropractor, tried homeopatic rememdies, chinese remedies, and although some work but only for a short period of time. I am at the moment trying ayruvedic herbal meds, and it's early days to report back on this, but I will let you all know of my experiences in the coming months.

    You will get plenty of support and advice on this forum, with such lovely people sharing all their experiences with each other.

    Gentle hugs and hope you get your answers soon wink x

  • chrissyboo
    chrissyboo jamierose

    Posted

    Hi,

    I am in exactly the same position as you.

    I had brilliant results with gabapentin for about two years but allergic now. I have a tens machine which is great but can't really help anymore than that other than to say your not alone

    Krissy

  • jamierose
    jamierose

    Posted

    Thankyou everyone for your warm welcomes, kind words and advice. Its lovely not to feel so alone xx
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