Newly Diagnosed

So after an 18 month battle with doctors, consultants and specialists, last week I was finally listened to and agreed with about having Fibromyalgia.

After what I thought would be a good appointment with a doctor that listens to me, and has been fabulous in the past, it ended up with me getting angry, crying and about to walk out before he took me seriously. He performed the "new test" - and said he agreed with my diagnosis. And that was it.

In his confirmation letter to my GP he says "as I have no real answers, I transfer her back to your care" - geeeee thanks!!

Anyway, I guess what I'm looking for is any tips people might have - because if I'm told once more to lose weight, exercise and practice mindfulness - I'll be practising something else!!

25 Replies

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  • Hello. So sorry for your diagnosis. It may be something you've wondered for a while but actually getting it confirmed can hit quite hard so take time to get your head around it. There's loads of great tips here and everyone understands because they are right there with you, they know 'exactly' what you mean no matter how badly you describe it!

    My top tip is to research all you can...when you can. The fibro-fog makes it difficult so take it slow...bite-size bits of information...and in the end you will know more than your doctor does about fibro and you will need to so that you can get what you need.

    I should be asleep now....but no, it's all just part of the package....fibro, the gift that keeps on giving eh?

    By the way...important note: you need to 'lock' your posts....you get more replies that way. And now you'll ask me how.....there's a box you tick at the bottom of your post ' ONLY FOLLOWERS IN MY COMMUNITY'.....that way it's not open to the whole t'interweb.

    Take care. xx

  • Hi!! Thanks so much for your reply! I feel a bit deflated actually having the diagnosis now, as like you say I've thought I've had this for so long now. However it does give me the answers to the things I've thought I'm going crazy about - the words being mixed up, the fatigue, the itchy/crawling skin, the bruises (etc etc!).

    Thank you so much for the "locked" tip - I had not realised I needed to do that!!

    Kat

    X

  • Hi katwilson04

    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 have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    Personally speaking, I would talk to your doctor about what medication options there are for you, as I think this is the best start? I also undertake a daily physio routine which I find very useful. It is a very gentle movement physio bending knees and rolling etc. So asking for a physio referral could be another option? I also use a TENS Machine when my pain gets too much for me and personally I find this very good.

    I gneuinely hope that some other members come along and offer you some of their insights into what they do? 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

  • Hi Ken

    Thank you for your lovely message! And thank you for your advice!

    I already do the knee rolls, etc etc as I have spinal conditions too, so i have a list of exercises from my Physio which I still do after my first spinal surgery 6 years and then my 2nd surgery 3 years ago. I have tried a tens machine in the past and did not see any benefit.

    My GP hasn't been very helpful, all they want to do is give me Nortryptelene. I have take this before aswell and I had quite bad side effects. So this week I chose not to take these again.

    I have been looking in to supplements, things I can take with less side effects. So I've started taking Ginseng. Also taking Cod Liver Oil and a few other things too.

    Thank you!

    Kat

  • Hi again my friend,

    I am so truly sorry that these thing shave not helped you. I was wondering if you have had a blood test for Vitamin D? Many members on the forum have a Vitamin D deficiency and this can also lead to chronic pain? I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Ken. No I havent had this test yet. I meant to ask my doctor about it this week and completely forgot when she called me. I can only get phone appointments with my GP as they don't want/need to see me!! But I have written this down for the next time I speak to her and will get this checked. Thank you!

    Do you know anything about a lack of Vit B with Fibro? I've heard people get injections for this too?

  • Hi katwilson04

    There are plenty of links between Fibro symptoms and low vitamin B12. The *ProHealth website says:

    *A feeling of being tired all the time. Problems with memory and concentration. Trouble sleeping. Diarrhea and/or constipation. These can all be important signs of the body’s need for more vitamin B-12.

    Vitamin B-12 (cobalamin) is an essential nutrient, meaning it is required for normal body functioning but cannot be produced by the body.

    Therefore, it is necessary to obtain the B-12 our bodies need through the food we eat and/or dietary supplements.

    A vitamin B-12 deficiency is relatively common – thought to affect approximately 15% of the general population. That percentage goes much higher among people with chronic illness.

    So it may be best to ask your doctor about this as well as the Vitamin D blood test. I want to sincerely wish you all the best of luck my friend.

    All my hopes and dreams for you

    Ken

  • Sorry for putting that's what happened to me vitamin d was low still in loads of pain though and cos you're in terrible pain and get anxiety they want youto pycharist Im still waiting on biopsy of muscles to be absolutely sure its nothing they have missed because had nurious test which I didn't nessaary so I'm hoping on that for closure cis they have said fibromiogy but need in my mind to be sure because not exspeared anything like this not really had any really good days only being able to do 15 minutes in kitchen but know by the time I'm seated again the pain start again xxx

  • Butting in I mean sorry

  • Hi Kadenone I want to genuinely wish you all the best of luck with this my friend and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Hi Kat, I'm so sorry to hear you're suffering but I guess now you have a diagnoses you can try to move forward with it a little now. I'm still in the process of being diagnosed but suffer with so many different ailments tied to fibromyalgia I can really understand how it grinds you down. I was just wondering what tests did you have done as part of your diagnosis, it would be really interesting to pass on to the professionals. Best wishes Rachel and please feel free to read my posts as I'm new on here x

  • Hi Rachel! Thanks for your comment! How long have you been trying to get a diagnosis for?

    I've had various blood tests, which of course don't really show anything which is why my GP is very unhelpful in the first place as it "doesn't show I have Fibromyalgia" - insert eye roll here!!

    But I went to see a rheumatologist 3 weeks ago - an apparent Fibro specialist who said "I've nothing wrong with me" - at all! Bit strange seeing as I've had numerous surgeries!! He did the pressure point test and ever point bloody hurt apart from my knees - but still that wasn't enough for him.

    After giving up on him I went back to my pain specialist who has known and treated me for over 7 years now - he too is also a Fibro specialist. I've been going back and forth for 18 months now trying to get them to take my new pain seriously, so have had scans, etc etc, but I read up on everything I could find, wrote everything down and presented it all to him. He did the new diagnosis test and confirmed that yes I do indeed have Fibro.

    Good luck with your journey, don't give up. I almost did, but then the anger/determination of no longer being fobbed off took over!!

  • I've only just started in the process I have an appointment with musculoskeletal on June 5th. I too have had loads of bloods taken and yes all clear so I just have to wait now. It's awful how you've been fobbed off so many times it was the same for me with endometriosis. What is the new test that they're performing I might just insist on that much love Rachel x

  • It's a test with 3 sections, where they are what your symptoms have been over the past week, sort of a check list, and depending on how many ticks you get, you are scored on that. I scored quite highly so there was no doubt. I did say well why was the pressure point test not taken in to account, but he couldn't answer me "as he can't comment on another doctor's diagnosis" - again insert eye roll here!

  • Congratulations on being persistent and getting a diagnosis, just a shame it takes so much effort. It's exhausting getting upset like that too.well, I just wanted to say the best natural remedy I and a lot of the others here use is Epsom salts in the bath. The magnesium really helps with pain and stiffness. There is also a magnesium spray lotion that some find easier to use. Also lots of fibro peeps have low vitamin d level, doc can check, and vit d also helps with pain levels. All the best

  • Thank you very much! I struggle to get in and out of a bath due to my spine, but I will remember to get salts for when I'm able to have a bath. I also bought some magnesium spray, so will try that too.

    Someone also said to me to get my Vit B levels checked, would that be right!?

  • You can also put feet in bowl of warm water and Epsom salts your body will still absorb the magnesium. B vitamins provide energy which will help with fatigue, so could be worth checking too. Forgot to say, concentrating on something takes your mind off the pain, so anything from crossword puzzles to art, knitting , whatever you find interesting. All the best

  • Thank you! I'll definitely be getting some salts! I have taken up knitting, and do a bit of crafty things, but my fatigue gets the better of me most of the time! But i do agree concentrating and having things to keep you occupied does help!

  • The lady I spoke with In Holland & Barrett said to spray the magnesium spray on your feet at night and rub it in because the body absorbs things well through the feet. xx

  • Oh good tip! Thank you!

  • Hi Kat and everyone

    Im sorry to hear of your diagnosis and lack of understanding. I don't have all those tender points when they press on them but I'm sore everywhere even my teeth sometimes!

    I thought they were moving away from the tender points as a way to díagnose, anyway.

    It seems like that's all they suggest because they don't know how to manage FM and to me it seems like a big cope out putting the responsibility back on you.

    What I find promising though is that there seems to be more research being done on management and even a cure if they can work out the cause!

    I subscribed to this website and find it good to read about new developments healthrising.org/about-us/c...

    I was diagnosed 17 years ago when I was 31 and I had been aching for yrs thinking it was part of getting old! I lost 17kgs and i was doing minimum 90 minutes of swimming and treadmill 6 days per week. My mood improved and I felt better as it had been yrs since i was a size 10 but, nothing changed. I was also later diagnosed with chronic fatigue syndrome, spondylitis, hypermobility, degenerative arthritis and ADHD which explains the ongoing depression and anxiety as far as I remember. I was hit from behind and that I feel made me worse but the insurance didn't take responsibility beyond being off work for 2 mths and reduced hours.

    Ive seen chiros, physios, naturopaths, acupunture, healers and I even went to India and had Ayurvedic treatment. I tried an alternative GP that used IV vitamins twice per week for a couple of months together with a strict detox and reintroducing food gradually along with lots of oral vitamins. I've had kefir and no difference.

    I wear orthotics everyday because I have a 2 cms leg length discrepency but even after introducing them after a few years didn't make any difference.

    The only thing that helps a bit is having a regular massage to stop the tension build up I get. I should slow down and pace myself but I can't bc of life demands. I have no partner or an extended family that can offer any support.

    I have friends but they have their own lives and can't really provide any practical help.

    The latest thing I was told that made a bit of sense was that the fibro exacerbates my arthritis pain which apparently shouldn't be as bad looking at the scans 😬 Yeah right!

    In the past decade I've been much worse but I've also suffered a few traumas like unexpected deaths of close people and divorce. I have a very demanding job, a grown up son that has been acting like a teenager and whenever i see him i have a flare and also have an 8 yrs old daughter diagnosed with mild autism and ADHD that can be a handful and a sweetheart!

    I've gradually increased the intensity of pain medications and I am dependent but I don't feel i have a choice. I've been trialled on 2 different patches for pain, 3 types of anticonvulsants and a few of those older antidepressants like nortrip... and 2 of the newer antidepressants like cymbalta and savella but have had to stop bc of side effects.

    I felt better on Savella but sweat kept pouring down even on a cold day and I felt sick so had to stop them. I tried turmeric tablets and in powder form and rubbing magnesium oil but don't feel it helps much either.

    I feel like I've finally found an anaesthetist/pain specialist that's willing to try other treatments but I have to join a health fund which isn't compulsory in Australia. He refered me to a public pain clinic in another area to go on a trial for fibro of transcranial stimulation. I've filled all their forms and am waiting for an appt. They also use ketamine infusions as an inpatient and if you go to YouTube there's lots of great videos of people with chronic pain that have found relief. My doctor said some people even get a full recovery or at least some improvement with ketamine.

    There's a couple of treatments that I feel have not been explored enough - one with using antibiotics and the other one using antiretrovirals for a long time.

    I've also tried to go on trials for pain but I'm rejected bc I take regular medication.

    It's good that you found this site. I'm also on some FM FB pages but I really have to watch how long I spent on them as I don't have much time and while I found FB great to make friends that know how you feel, l also get tired of hearing the same things and if i focus too much on it, i think I feel worse.

    I'm about to start taking SamE which I took before and really helped with my mood and it is recommended for FM. I had no side effects on it. I want to start again taking magnesium, probiotics and go to a regular yoga class and do short meditations every day.

    My main symptoms are pain and extreme fatigue.

    Sorry for the long post. I guess i wanted to give a really good overview of what I've tried and my own experience with treatments. I don't mean to sound negative, just offer some of the things I've researched that have helped some people.

    All the best. Try to do things that make you feel good. I find sometimes I forget about the pain when I don't think of it as much.

  • Hi! Thanks for taking the time to comment!

    They are apparently moving away from the pressure test, which is why I got the new test done also, but the first doctor I had didn't even acknowledge the pain on my pressure points and ever bothered to do the new test, he never even mentioned the word Fibromyalgia!!

    It sounds like you have a very hectic life! Do you find that being/keeping busy helps, or do you crash a lot quicker?

    There are lots of things I need to look in to, seems different parts of the world are far more advanced!

    I wish you well with your treatments and hope you find something that works for you.

    Remember though to take some time for yourself and relax a little when you can.

    Xx

  • Hi Kat

    What was the new test? Now you have me wondering! Hahahaha

    Yes, it does help me to be occupied but I do overdo it, sometimes like I said it's self inflicted and others I feel like I have no choice. Although the reality is that there's a choice in almost everything we do. But for me to give up, would also mean giving up 'a lifestyle' like selling and buying elsewhere that I may not like and downsize to a unit and potentially lose our pets which for me are a big part of 'our therapy'.

    I decided to move after 11 years about 18 mths ago and it was bigger than i thought. I'm learning to be more realistic about what I can achieve. Sorting out things in the new home things i don't need and and doing home improvements to make it functional has been my main focus.

    I have' cognitive deficits' which is a symptom and I get overwhelmed compared to what I was like before I started to deteriorate and I forget where I put things so I'm trying to organise things in a way that makes sense to me and I can find everything! 😀

    I find when I get more 2 wks off work, I get out of balance and feel more depressed becuase i don't have a routine and all i do is sleep or sit around if my daughter isn't here so I feel less productive overall and sometimes my pain can get worse especially if I'm not getting out of the house, I get 'cabin fever' lol 😂

    I did an online group course. i don't know if its still around. I got a book and CDs. I think it was called CFIS or something. It was helpful because you were supposed to try the skills and kind of report to others every week on line.

    All the best'

  • I know what you mean, there's busy and keeping occupied and then there's doing waaaaay too much! There never seems to be a balance, it's one way or the other, for me anyway! Xx

  • So true! 😀

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