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Help desperately seeking advice

Posted , 5 users are following.

jane218p
jane218p

Hi everyone I have only recentlyish been diagnosed with fibro, but have lived in So much pain for about 15 years! Now I have a reason for the pain I have been learning all about fibro.

My biggest worry is tat it is getting worse and worse! Walking can be impossible some days but now it's my as and shoulders! Every time i move my right arm the pain is terrible! And it's weaker? Am I likely to end up in a wheelchair? And will it just keep getting worse? I can't remember a time I wasn't in pain! I used to do so much, now sometimes just sitting up is unbearable!

Feeling lonely and scared

2 likes, 15 replies

15 Replies

  • erykah71
    erykah71 jane218p

    Posted

    Hi Jane,

    Firstly, you have come to the right place with loads of lovely people who can support you and give great advice. Even if you just need to get a moan off your chest.

    I know exactly how you are feeling, I have only recently been diagnosed (May this year) and as well as the constant pain all over, my life has changed......and not for the better

    I too have terrible pain in my shoulder, (although mine is my left)painful upper arm and elbow and if I lift my arm as if to reach for something I get terrible shooting pain or pins and needles down the outside of my hand. somedays am unable to use the arm at all.

    I haven't yet found any combination of meds that make me feel any better particularly my shoulder, and I have been off work again since June sad.

    Has your GP referred you to a rheumatologist? What meds are they trying?

    I'm currently on 150mg Lyrica, twice a day and it still just as bad.

    You will not neccessarily end up in a wheelchair, although some days you will feel like you need one. 

    You just need to learn to pace yourself, and remember this horrible illness punishes us if we do too much

    If you have ay questions this forum is amazing so no need to feel lonely or scared, there is always someone here

    Gentle hugs Ery x

    • jane218p
      jane218p erykah71

      Posted

      Hi thanks for your reply, I have been other posts on here and it's almost amazing to see how NOT alone I am! I have felt so on my own with this pain for so long!

      I have been to rheumatologist, they diagnosed fm along with chronic tendinitis, I am on a whole host of meds like gabapentin, meloxicam, arcoxia, co dydramol, then I have an anti depressant,migraine pills, diazepam, basically I rattle lol! I feel it's so hopeless tat I take these and they don't make the pain go away! What's the point? It's hard to be positive some days x

    • erykah71
      erykah71 jane218p

      Posted

      You are definately not alone.

      When I first joined this forum, I read posts I could have written myself. Although I have a very supportive family, I still had that niggly feeling that somehow it was all in my head until I came here and saw so many similarities that others had shared.

      I am still learning about this condition and my symptoms change from day to day. But just knowing that I'm not alone and having somewhere to share my feelings and worries is invaluable.

      Try and have a good day x

  • bronwyn97278
    bronwyn97278 jane218p

    Posted

    Hi jane; yes we all understand how you are feeling, as we have/are still going through these feelings   ....some days better than others......I don't think ALL sufferers of Fibro end up in a wheelchair, but as Erika says, there are days when we feel as if "we Do have to go somewhere when Not feeling the best", that a wheelchair would come in handy...(many of us have a walking stick for those days).....I guess the hardest thing I find is "not knowing which part of my body is going to "play up today"???   but if you have a Good Rhuematologist, who knows Fibro and all the latest and most successful meds then this is your first step reached.......there are many meds our there (as well as vitamins/minerals/supplements ) that we take.......I find that Gabapentin/Neurontin and Amitriptylline are the Best for me (along with some Oxycontin SL )....added to these, I take Magnesium with my meals (this helps with the muscle activity/spasms)....also Vit D and B12.........and Yes, learn to pace yourself....this means that if you know you have a Drs's appt/similar event, don't push/do too much the previous day, and then give yourself the next day to let your body rest..............another natural therapy that I find to keeping my muscles relaxed is physio/massages........you mention your shoulder/back pain.....there is something else we need to watch, for as this condition affects our muscles/tendons etc, there is a condition called "tendonites" which can become an issue for some (I have had this problem), so I am wondering have you discussed this with your GP/primary carer?  and Yes we do find that our muscles do become weaker, although they don't appear to look "wasted"...just weaker............so it's Yes to some  of your questions, but when looking for answers, do come back and ask, as there is sure to be someone who has had the same issue/s....................Bron
    • jane218p
      jane218p bronwyn97278

      Posted

      Hi Bron, thanks for your reply, my rheumatologist was great at first, she ordered lots of tests to be done, then I went back the second time- she gave me all the test results told me I had fibro and chronic tendinitis and discharged me?? She didn't even reay explain anything just gave me a leaflet to read!! I have the tendinitis in my Achilles on both feet, it makes walking at any time painful, so could it be the same thing going on in my shoulder? Is there anything I can do to help it? I used to love swimming but can't extend my arm to swim now and it's to painful 😢 , I didn't even realise you could get tendinitis in other places! Jane x
    • bronwyn97278
      bronwyn97278 jane218p

      Posted

      Yes Jane; for me I started with having Regular Physio on tendonites, then was referred to an Orthopaedic dr who ordered Cortisone Injection into site......when this didn't heal, I ended up having the Tendon cleaned out surgically, as this is what is happening...the Tendons are infected, and the Puss needs to be cleaned out....if you have it Chronically, I would be asking for a referral to an Orthopod ASAP and go from there (research/ask local physio who they recommend, as that's how I found the right one for me).....if you have it in both Archilles Tendons, this is probably the reason that you are finding it Sooooo hard to walk (they must be very sore/tender, as I know mine was).......and yes it could be happening in your shoulder too....ask for an Ultrasound on same........good luck......Bron
  • kaz_40
    kaz_40 jane218p

    Posted

    welcome to the forum Jane218p Fibro affects us all differently on the severity of it. As some people can have it mild where as some can have it at an extreme level. we are all different fibro is different with each every one of us. I was diagnosed last year after 10 years and loads of tests and seeing many specialists. My own experience of fibro is 3 years in a row I had to have carers in as couldnt walk or speak since last year my mobility has got worse, I use a wheel chair when I go out. I use a walking stick constantly and also have a walking frame. Im in constant pain with my back and legs. Im unable to take anything for the pain as Im allergic to opoids. so I use wheat bags and hotwaterbottles. fibro is variable you can have a day where theirs no pain another day where your in agony.you cant say how your going to be with fibro from 1 to another and 1 min to another. fibro also affects us even more when we are ill with something else eg the flu. fibro makes things 10x worse. we have to take 1 day at a time take things steadily just pace ourselves. dont over do things as fibro likes paying us back when we do. if all you can do in a day is dust then that is all you can. just go by what your body is telling you and dont fight it as you wount win. plenty of rest sleep is important if you can. sleep pain are 2 of the biggest problems with having fibro. get as much help support as you can. and aids to help you. your gp can refer you to a pain clinic cbt therapy some areas do free acupuncture for 12 weeks and also hydrotherapy see what your area can offer you. Only take medicines that have been prescribed by your gp. see if your area has a local support group for fibro. you arnt alone on here we are all here for each other. no one can say if you will end up in a wheel chair or not as fibro is so different for us all.I spent 6 months and over in bed with carers coming in Im at the extreme level. You can sometimes go in remission with fibro where you have no pain or symptoms but again this depends on how fibro is affecting you and the severity of it. it waxes and wanes so much. take care gentle hug x
  • lisa52101
    lisa52101 jane218p

    Posted

    Hi Jane, 

    By now you will have certainly realised you are not alone and fibro is most definitely not all in your head. Saying that I'm not going to reiterate the excellent advice either. Suffice to say you can always find someone on here that you can moan to or get advice from. Also, if you haven't done so already, you too will be talking to people about things you've learned and could be helpful. 

    Ive been diagnosed for nine months but had it for around 8yrs now. Asking for the physio app is vital though for two reasons, firstly I don't know how you're standing with tendinitis in both feet as its soooo painful but also fibro can make everything so much more difficult to handle. 

    Take care and know someone's always here for you xx

    • jane218p
      jane218p lisa52101

      Posted

      Hi Lisa thanks for your reply, I have had a real rubbish few days, not been able to do much at all because of pain! My ankles are total hellish! It is sooooo painful and I have Los on the back of them both! I have had an appointment through for physio at the end of this week so maybe they will be able to help? Not sure more exercise is the answer though lol but here's hoping! Just walking to the loo is awful, it can be hard to not give up sometimes

      Hugs n best wishes

      Jane

    • lisa52101
      lisa52101 jane218p

      Posted

      Hi Jane,

      dont worry about taking time to reply, we all know what that can be like, sometimes just waking up can be enough. Just want to say good luck with your physio and I really hope you can some answers but especially some relief.

      it would be nice to know how you get on but not to worry about it. Simply concentrate on getting better.

      Best of luck xx

    • jane218p
      jane218p lisa52101

      Posted

      Good morning Lisa, it's so nice to hear such lovely replies of support from people on here! It's not something I am very used to, it's not the same at home! Fibro is like an invisible demon, a 10 ton weight that squashes down on u and I hate it! I would be happy to share how physio goes, I am keeping every crossed that it will help somehow, but also scared it wont!to b able to walk better again would be heaven! Nothing relieves the pain of tendinitis! I strap my ankles up tightly, use Ice n heat etc, now my shoulders are hurting to it seems hopeless! Don't feel like I want to carry on anymore, I want to be able to live life not battle with it!!

      Thoughts n hugs

      Jane

    • bronwyn97278
      bronwyn97278 jane218p

      Posted

      Hi jane;  have been following with you through the above inputs from others, and am hearing sheer desperation???......although I feel that physio is one step to getting those ankles and now your shoulder, onto a healing process.....however, also feel that if you can get a referral to a good Orthopaedic surgeon, he/she will hasten your care/healing for the tendonites......these are the specialists who order the Cortisone Injections, and are also the correct specialists if more advanced treatment is needed........can you afford to pay for a first consultation with a surgeon, to get things moving faster, as it sounds as if you have been suffering for quite some time, and need their help Now.........let me/us know how you feel about this.....(also not sure which country you are in, but if in Australia, you will find, that by even paying the upfront fee, you will get at least 3/4 back through medicare.....i.e 85%  of Schedule fee)..............Bron
    • lisa52101
      lisa52101 jane218p

      Posted

      Hi Jane,

      I completely understand what your saying. Don't let me alarm you by what I'm about to say, I have some complex health issues other than fibro, but I want to illustrate why I get where your feeling of desperation comes from. I went from being someone raising 2 children, working full time, heavily into competitive martial arts, cycling, yoga and swimming and within 6yrs I was in a wheelchair whenever I left the house. Now there is no reason to believe that this is going to be the way for you but I really understand your frustration and fear at what's in store for you. Here's the thing, regardless of what life throws at us we usually cope but it's also ok to be angry at what we've been given. Tendinitis is treatable, it might take a while and you might feel like your seeing one person after another but it will get better.

      As for the fibro, I don't know. It affects us all differently. Some people it's an irritation with occasional flares, whilst others are hugely altered by it. However things turn out for you, you are already altered by what you're dealing with and its ok to grieve for the person you were pre all of this.

      Look at it this way. Hopefully you will go back to living the same way as before. Regardless of how it all turns out you're going to have much more knowledge and you will be able to offer help and support just as everyone one on here is now. There's nothing more scary than not knowing what's happening to you and not seeing an end to it. Trust me though, you will get there and as I've said we do understand on here. If we can offer help and support we will, and if for some bizarre reason we don't know, someone will know someone who can.

      Good luck xx

  • jane218p
    jane218p

    Posted

    Good morning all again! I am overwhelmed with your responses! Thank u all so much! I am in the UK and not really sure what options there might be for me with regards to ortho surgeons etc, I am going to look into that one, I have my first physio appt Friday maybe they will suggest something?

    I have decided to take a positive attitude towards Fibro, and just keep trying to live life as normally as I can, I have 5 children all daughters 😉! The older 3 are grown up and really supportive! The younger 2 are more affected, because I can't do so much with them anymore,

    I am inspired by all of you who are strong and keep going through all of the hell Fibro throws at you, I am going to strive to be more like you 😘 thank u all again

    Hope everyone has a great day, thoughts n hugs xx

  • jane218p
    jane218p

    Posted

    Good morning everyone again,

    Just a quick update, I went to physio yesterday ! He was really nice and very understanding! He's said tendinitis is quite bad and my ankles are weak! But they can offer lots of different types of help like acupuncture and hydrotherapy!! BUT I am waiting for a lung specialist referral to come through because I have reduced transfer rate and fev 1?? And until I have had that I cannot proceed with those options at physio! So it's heat and exercise for the next 3 weeks! Oh and he said he thought my shoulder problem could be an impingement whatever that means???

    Thoughts and hugs to all

    Jane x

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