cant cope with fybro

i was diagnosed 9 months ago with fybro i have vitamin d deficancy which caused me to have ostiomalacia ibs anxsiety clinical depression borderline personality disorder ciatica lower back pain cronic fatigue restless leg syndrom i have 5 kids ranging between 21 and 1 years old i have had my house modified so i can get around easier 6 weeks ago i broke my arm my humerous bone fell over flat on my face im 38 i cant do anything for myself im so depressed i dont no what to do anyomore my doctors treat me like im some prescription pain killer junkie the specialist rumertoligist hates me. because i no a little bit about my illness he was supposed to be checking me for lupus i missed an apointment because i was ill he discharged me ive had enough im on pregablin 300 tramadol 50 vitamin d paracetamol nefapam 30 mgs duluxetine 40 mgs i came of sertraline to go on duluxetine but it hasnt worked im having a depresive episode i need help thanks for listening

27 Replies

oldestnewest
  • Hi Khaleesimadgyal

    Welcome to our wonderful forum I am so sorry to hear that you have been diagnosed with Fibromyalgia, but very happy that you have found us.

    You may like to have a look at our mother site, which contains some very useful information fmauk.org

    Just to let you know, for internet safety reasons, we recommend that you lock your posts. Unlocked posts are open to anyone who sign on to the internet to read, whereas with locked posts only the first 140 characters are visible.

    On the right hand side of your screen under Pinned Posts in blue, you will find Step by Step Instructions on how to lock new and already loaded posts.

    You can tell a post has been locked as there will be a little black padlock at the end of the title.

    You do state your in a depressive episode MIND is a good place where you can get support and talk to your GP as to how you are feeling. They may refer you to counselling or some type of support.

    Please don't hesitate in asking for the support you need my friend.

    Good luck

  • Hi Khaleesimadgyal

    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/

    I am so genuinely sorry to read of how you have been suffering and struggling. I was wondering if you have ever had an occupational therapy assessment from your local social services to ascertain if there is any help that they can offer you? You may be able to get a care package to help with meal times for your children? Or assistance with their care such as bathing and washing etc?

    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

  • I have read the other replies and they have good advice. I have RA/Fibro/cfs/compressed disc and other problems. I usually post on the RA site with HealUnlocked,but your post came in my email and i just felt i had to tell you your do not alone,you have beautiful children and they will be your support system. You can always message me if you want to talk to someone. ALso sending you oodles of hugs.xxxxx

  • thank you so much x

  • Hi, sorry to hear about your situation, hopefully you'll get a good range of replies to your post. I have vitamin d deficiency and am wondering which of your symptoms your doctor has put down specifically to this condition as my doctor has never actually told me the consequences of my vitamin d deficiency.

  • I have Vitamin D deficiency too. I also haven't had any explanation as to why.

    Wishing you a good day :)

  • it causes ostiomalacia which is also called rickets your bones become weak and soft as you walk you cause little haur line fractures in your bones and you have to take tabletss every week fo tthe rest of your life hope this infomation helps

  • Morning

    Sorry to read about your poorly state.

    In my opinion (and well documented) tramadol is likely to make many symptoms worse!!

    I had to take it for a few weeks in 2014 ( I had a stroke).'... but found the bad side effects truly awful and came off it asap. Took some courage and a week of cold turkey hell.....but, oh so much better without it. Fewer suicidal thoughts, betterco.concentration, less shaky etc etc

    I know some will disagree...but I would suggest thinking about it and taking advice.

    K

  • i dont get thoes sypmptoms i dont even feel it working the pregablin is my problem

  • Thing is it's a heroin derivative so you wouldn't necessarily feel it "working" , and very easily become addicted and need more of it to "work".

    Best thing I ever did was giving up artificial sweeteners and anything with them in.....helped me with my pain no end.

  • Hi my heart goes out to you. I honestly do know how you feel I was on all the same medication I was a walking zombie until I came of 99% of the medication I didn't see why I had to take 30 tablets a day that didn't help me, iv had depression for 33years fibro for 7 I know it will not work for all but cannabis gave me my life back. Hang in there I honestly wish you all the best x

  • Hi so your saying cannabis works for pain , how do you take it ,how meny times a day ,I don't know about it I know people have said it's good but I thought they were addicts Suzey X

  • I take it vapourised with a small machine 4-5 times a day I'd rather this than tablets that waste your head. It's helped with my depression, pain,sleep,eating, ect it's been a God send, I genuinely hope this helps, the problem in the uk is you don't know what strain and strength you buy from the streets knowing someone that grows a good strain is a bonus. Chin up and focus on being aswell as possible and I hope all goes well x

  • I'm trying vaping with the legal CBD hemp oil. Ive only had one joint in my life and I didn't like it to be honest. The advertising for CBD says it deals with pain but I've just up graded to a stronger oil and it still doesn't do much for pain. It's expensive too but I'm continuing because it saves smoking rolling tobacco and I like the hit I get from the CBD , often helps when I feel like munching chocolate to actually curb my desire to eat. Others may get a different reaction to CBD though I guess. I'm vaping the 300mg strength.

  • Hi there, is this hemp oil available in the UK? My daughter keeps on at me to smoke cannabis to help with symptoms but I point blank refuse as its an illegal substance.

    Is it a prescription thing or something that you source yourself?

    Wishing you the best day you can have x

  • Hi,

    Some but not all the places that sell the vaping oils in U.K. will have it in the U.K. I didn't enjoy cannabis when I tried it about 25 years ago! This hemp CBD oil is supposed to be good for pain but I just enjoy it as an alternative to rolling tobacco, not much pain relief for me, but everyone is different I guess.

    You can also buy hemp CBD oil in Holland & Barrett uk. Don't vape it, you are supposed to put a few drops under your tongue then swallow.

    My next thing will be food allergy tests, maybe I'm allergic to something! Might as well try is my motto!

    Good luck

  • It's not therefore prescription based.

  • Yeah - but here in the US it is still illegal almost everywhere... I wish it were't

  • There are several states that allow cbd oil derived from hemp. They sell it at the local health food store. You should check with your state laws and see if you could get some. It has to be hemp derived for my state, that has STRICT medical laws (basically children with cancer, that's it). Cbd from hemp has 0 thc, so i guess it doesn't count, i don't know.

    Good luck××

  • Thanks - I'll look into it

  • see it depends what type because some make me paranoid

  • Hi Khaleesimadgyal,

    You are not alone, I know just how you feel, I would think that most of us here know feel too, so you've come to the right place for advice and understanding. I take tramadol, amitriptyline, zapain amongst others, I also take calcichew twice a day & folic acid every other day for my bone health. I think it takes a bit of time to find the best meds for you as everyone reacts different. Try to find a local self help group where you can meet up with peeps who are going thru what you are or have gone thru it and can give you a bit of help with getting help!

    That's a wide range of ages of children you have, can any of them muck in and help you with day to day running of the house and give you an hour or two to have a laydown/rest/power-nap mid afternoon and help with your youngest one? You are still a young lass (I wish I was lol) and have so much going for you. I started crafting and it helps to keep my hands (& brain) going. Actually so many fibro-mites that I know do crafting of some sort that for a while I wasn't sure which came first ;)

    Try to take things as best as you can, can you see a different doctor at your gp surgery? I tried to see which Dr was good for me, it helps if you have someone at the surgery on your side as it were. The rheumatologist sounds a bit harsh too :/ maybe you could see someone on his team next time?

    And as Dory days "just keep swimming" but maybe wait til your plaster is off, eh! ;)

    Lisa

  • I feel for you. I think the first 12 to 18 months are the hardest as we try to adjust and in some ways grieve for who we believed we were. We are still that person, but with a new way of doing things. I also was put on vitamin D tablets and if I am honest they have done more than anything as vit d can cause pain and nerve damage. They are only just beginnig to discover how necessry it is. I had a bad fall, due to fibro and dislocated my thumb. As I am a very keen crafter this was devasting so I know where you are coming from.

    Speak to your Doctor, and ask if you can be refered for Cognitative Behaviour Therapy - sounds intimidating but really its to help you to talk things through without telling you what you should do/feel. If you are in England some councils offer the Expert Patient Programme where you meet other peole with long term conditions, I appreciate this is very difficult with children, but they do do day and night sessions in my area. There may be a support group in your area this can act as a buffer as you are with fellow people who really understand. Rethink and Mind both offer support and you do not have to be referred by a Doctor.

  • Just had to say I love your name tag Khaleesi....I'm assuming your children are human ones and you're not, in fact, a mother of dragons! Anyway, sorry to hear you're having a really tough time - I have to agree with a few of the others when they say some of these meds just make matters worse. Obviously you have to get guidance from the prescriber/GP but I honestly believe that the side effects of some meds make us more ill than the fibro itself. In the last month or so I've reduced and stopped dihydrocodine 500s and feel better for it. Don't get me wrong, it's not all sunshine and roses but I don't feel so ill anymore. Can I suggest you research '5-HTP'....it's from Holland Barrett stores...and it helped me get some deep restorative sleep...I've been taking it for about 6 weeks and I won't take it long term but I've read that a lot of fibro-folk use it. Just see what you think, it's an option to consider...but IT'S VERY IMPORTANT that you check first that it won't interact with any meds you're on right now.

    Best of luck Khaleesi. xx

  • Hi just read your post i sympathize with you constant pain and depression is not much fun to live with. I have lived with pain for 29 years 6 back operations mental healt problems and fibromyalgia. Have you been under the pain management team to help control you medication and find the best that helps you. Gp"s dont seem to listen so it is frustrating. Sorry cant be much help, there is no cure just managing your condition, it is hard, im struggling to walk at the moment and feel like giving up but i have to be strong as i have a family and a son with leukaemia which is not curable please take care i wish you all the best.

  • So sorry you're having such an awful time, plenty advice for you tho. I too have stopped all prescription meds, it's a nightmare, but at least I don't have all the side effects. There are legal cannabis products that you can buy in UK, they don't have the ths in them, sadly they do not work for me, and I couldn't afford them anyway. As said before the real stuff does help loads of people, but you need to remember it's illegal in UK. Fight on!

  • Hi Khaleesimadgyal , Try to keep your chin up, I always find having a good old moan helps a little, especially when talking to people who truly understand. This site is great for that...You can pick up useful information too. We are all pretty much in the same floundering boat, So we do understand your pain and frustrations. If you can.......... its a beautiful day, get yourself outside,......free vitamin D......... All my best wishes Mick.

You may also like...