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fibro and osteo arthritis

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liz23617
liz23617

i am in agony especially at the areas with athritis i am on morphine patches,pregablin and paracetamol. the pain is horrendous i just want to cry the drs cannot give me anything else but i cannot go on like this anymore.steroids help but only for about a week but get side affects with it also. any suggestions please 

2 likes, 36 replies

36 Replies

  • christine26761
    christine26761 liz23617

    Posted

    My hands are a mess from Arthritis..had Fibro and Sjorens for 23 yrs now but it's that rotten arthritis that's seems the worst ,now anyway...I'm on Amitriptilyne 25 mg a night.p-( most if us are) ,apart from sleeping all night  like a baby and pain free...it realy helps me to handle whatever comes the next day...hit water bottles are great too..my only suggestions Liz..hooe you find some help in here..be blessed and have a lovely day..:-) xx
  • bronwyn97278
    bronwyn97278 liz23617

    Posted

    Hi Liz:  I'm imagining that your pain is from both (the Osteo and the Fibro), which I have, plus CFS.....my treatments are, and do help me....oxycontin (same as morphine);  Osteopanadol, Gabapentin (over the Pregabalin/Lyrica, which did nothing for me), Amitriptylline 35mgs (taken at night), valium 7.5mgs for muscle spasms (taken at night), and very important for the Osteo, is Voltaren (+ Pariet to protect my gut form the Voltaren).   For natural therapy/treatment, I, too use hotpacks, a special form of Dencorub, which has an added "asprin-like additive", and really rely on my Physio, which I have fortnightly, to keep my muscles lax and release the "knots" which develope in our ligaments...other things like Epsom Salts Baths, and in winter, I have my Electric Blanket on low to keep the heat flowing through my joints/muscles...and it's the winter months that I find my Osteo plays up more, so have also invested in a pair of "Osteo Gloves" sold by Aldi (they are gloves with the tips cut off, and they really Do help, especially when we have those days when our computers are our way of communicating/not thinking of ourselves and our misery)....Hoping that these have given you something to think about/help....most importantly, keep up your Rhuemy contact, and I also found that when my Emotions got too much of a hold on me, I had some sessions with a Psychologist.....however, I would imagine that the Pain Clinics of today would include these necessary sessions???    Will be thinking of you, and awaiting to hear how you get on...........Bron
    • christine26761
      christine26761 bronwyn97278

      Posted

      O, wow bron, thanks for that tip...what an amazing blog this is..Those Osteo gloves sound awesome, I gave a little Osiris with magnets all over them...I have to wear ordinary ones in too bith with their too cut if..but buying a oarespecially  for OA...is just toooo puuuurfect,.thanks..we don't have Aldi In this state-Tasnania 0z, but I will google and try find some in Tas....thanks heaps....I learn something new everyday on here, be blessed..have a lovely day..:-) xxx
    • bronwyn97278
      bronwyn97278 christine26761

      Posted

      hi christine...surely Melbourne would have an Aldi, if not one in Hobart?? I do know that aldi do have some on-line selling...I Think they are a German company, but not too sure on that????  xxBron
    • christine26761
      christine26761 bronwyn97278

      Posted

      There are Aldi's  all over Australia..but none here in Tasmania,  we are only a small island-only 500 thousand people live here so I guess it's not worth them being here, but I am contacting the Arthritis Foundation here today to see if they can get me some...have a lovely day Bronwyn...be blessed..:-) xxx.  And thanks again..xx
    • liz23617
      liz23617 bronwyn97278

      Posted

      hi bronwyn many thanks for your comprehensive  reply it was really useful and has given me some amunition for the drs. i have been with the pain clinic twice now and was discharged a couple of years ago as my condition was not changing!!!! when i have been refferred to physio many times but have always had to stop as they do not work with you just send u away with a list of exerciseses. i have had a lot of stress as just moved 4 weeks ago into a much needed bungalow but in and amongst had an endoscopy and ct colon scan as i have bad anaemia and the pain in my knees and fibro is just unbearable agony. thank you again
    • christine26761
      christine26761 bronwyn97278

      Posted

      Yay.. cheesygrinI've found some gloves online in Melbourne..can't wait for their arrival..like a kid waiting for a birthday present...I wire three pair if different gloves yesterday..grr..rotten winter and OA...I was looking everywhere fir the gloves..couldn't find any..then my husband said.,try looking fir pressure fingerless gloves and viola..loads appeared..thanks again really appreciate what I learn on here.,,be blessed, have a lovely day.,:-) xxx
  • arwen1972
    arwen1972 liz23617

    Posted

    My GP has referred me to the pain clinic at my local hospital. Maybe you could ask for the same thing? I am in constant agony too. I hope you get some relief soon.x
  • princesswinnie
    princesswinnie liz23617

    Posted

    I am new to all this so cannot offer any advice im sorry but popped by to send a hug and hope you get sorted xx❤
  • jeanne81532
    jeanne81532 liz23617

    Posted

    Really feel for you Liz. I too have fibro and osteoarthritis but fortunately my pain is reasonably controlled. I take 300mg Pregabalin daily, with either Tramadol or Co-codamol as backup. Also had my Vit D level checked and was found to be low, and did feel pain improved after starting supplements. As others have said: hot water bottles, Epsom salts baths. Oh just thought of something else: Zacin cream for osteoarthritis. It's made from capsicum and helps some people. Hope you get some help from our answers, and if not, at least know that we understand and are thinking of you. Gentle hugs. Jeanne xx
    • liz23617
      liz23617 jeanne81532

      Posted

      many thanks jeanne for your input i have taken down the details to suggest to the dr. i have been taking the top wack of pregab for about 2 years i dont think it does anything.hugs back take care liz
  • tiff74
    tiff74 liz23617

    Posted

    I do feel for you really, my meds have been changed so many time, your gabapentin can go up to max 900mg three times a day, and maybe ask about amatriptlyn I take that twenty during day and fifty at night, along with max dose gabapentin morphene melt paracetamol ibufroen, and most important laxative x ask worth a shot xx
  • HOTpicks99
    HOTpicks99 liz23617

    Posted

    Hi i too suffer from fibromylgia and oesteoporosis the pain got that bad im taking morphine gabapentin amongst other tablets going back to docs to up the gabapentin cos its not high enough ask tour doc if you can take morphine by tab not patch mite help hope u r able to get some proper help
    • tiff74
      tiff74 HOTpicks99

      Posted

      Totally agree highest dose gabapentin is, 900 mg 3 times a day.

      Try amatryptalin as well I take 20mg I'm the morning 50mg at night don't do both lots together you end up like a zombie. I also take morphine melt two twice daily as well as other things , but the patches have a tendency to live square red patches on the skin good luck at docs xx

  • loxie
    loxie liz23617

    Posted

    Liz - have a think about meditation, particularly Mindfulness (which is used specifically in the U.S. for post operative pain reduction) or even hypnosis.  It's the brain giving out the pain signals (which is why some thoughtless doctors refer to fibro being 'in the mind' - when they really mean brain).  These techniques aim to focus the brain away from the pain and show very good results in some people.  They don't require any physical exertion or techniques so anyone can do them.  At the very least they help with relaxation.  I do hope you find something that works soon for you, I feel so upset to hear you're in such agony. I'd hug you if I didnt think that would hurt too. xxxxx
    • liz23617
      liz23617 loxie

      Posted

      hello loxie thank you for your reply yes i have tried hypnosis but it did give amethod to relax to but find it hard to get into a routine to make it work, i have always found relaxing a problem. have looked into mindfullness and i am awaiting to go on a course. went away last weekend for a break had a an indian head massage which made me really ill, i felt sick and generally unwell. have also tried reflexology which also made me feel absolutely rootten and gave me more pain. thank you again it helps that people understand whats happenig to our bodies.take care liz
    • bronwyn97278
      bronwyn97278 liz23617

      Posted

      Hi Liz, me back.....wanting to let you know that I, also, tried Pregabalin (Lyrica) and it did nothing for me, either....feel it is for Mild cases, only.  Ask for the Gabapentin (Neurontin) and the Amitriptyline...as dosages mentioned above.  As for the physio....once again, this, too, you need to be adamant with....example for me....a couple of sesssions ago, I took a new physio in the clinic that I have been attending since 1998, and yep, got the usual routine of "do you do this, do you do such and such..."...for awhile I didn't bother to reply, but eventually just said " I'm sorry, but I feel I know more re me than you do. If you want to know my history, please read my notes, or talk to ....(the physios who normally treat me)"...that shut her up....I gathered she has recently graduated, and as ALL newbies, they know EVERYTHING !!! or so they think.....find yourself an older physio...and stay with him/her..they get to know YOUR body, and as such, will ask "where's it hurting the most today?/where do want me to work on today?"  I assure you this does help...as I have only recently decided that my physio works better than the Brace that I paid $1500+ for...the last time I went, my physio worked on my facial muscles, and was feeling sooo much better with my TMJ and thought "great, the brace is finally starting to work"...nope it was the physio, as now the facial muscles are back to hurting when I talk....so back to the physio I go next week......and have booked a Double Session, so that I can have more of my body worked on............rolleyessmile........Bron
    • tiff74
      tiff74 bronwyn97278

      Posted

      Go Bron go

      Every the fighter after my own heart, I still exercise but have found new things and different ways of doing them. Me and my husband have a half hour walk ever evening.

      Are time together is great and even thou sometimes that walk can take depending on pain it is helping

      1- relax

      2-clear my mind, xx

    • loxie
      loxie liz23617

      Posted

      Hi Liz.  That's the big problem isn't it, trying to relax, I sympathise - I get so stressed at being in pain and trying to do things that it works against me and makes it all worse.  I too find it so difficult to get into a routine of making time for relaxation.  I now go to a meditation class one evening a week - double  benefit, firstly the meditation helps, secondly it gets me out of the house for 'me' time and i can forget other stuff.  I agree with you about reflexology, I found it made me feel so much worse not better.  Just saw another doctor again today who finally agreed it 'might be' fibro and started talking about steroids again - i dont want to take them again they made me so ill and i gained so much weight on them - getting heavier just made it all more painful tokeep moving.  round and round in circles we go eh.
    • jeanne81532
      jeanne81532 loxie

      Posted

      Hi Loxie, I would definitely avoid steroids for the very reasons you mention and also because I don't believe they have a place in the treatment of fibro. They are usually prescribed to treat inflammation or infection, neither of which applies in fibro. Gentle hugs Jeanne xx
    • loxie
      loxie jeanne81532

      Posted

      Thanks Jeanne, that's reassured me I'm not being foolish in not wanting to take them.  A previous doctor I saw was convinced it wasnt fibro but something viral and prescribed the steroids on that basis.  They eased the pain a little  but made me so ill, i'd rather have the pain sad  I get the feeling local GPs dont really have a clue how to treat this so they just stab  in the dark with painkillers and steroids etc. - treating the symptoms rather than the underlying condition.  At least the doctor today volunteered the opinion that it may be fibro - not convinced however that an actual diagnosis will result in me getting any better treatment, we'll just have to wait and see.  More blood tests to be done so who knows something else may just show up like thyroid etc., which is infinitely more treatable within our outdated NHS.  keep smiling eh.
    • bronwyn97278
      bronwyn97278 loxie

      Posted

      Hi Loxie;  you should know if it's an inflammation if your ESR is elevated....if not it's NOTsomething else.....I have NEVER even been offered Steroids (prednisone) for my Fibro.....I've had Cortisone (a steroid) Injection into my Osteo affected joints, which really helped them  (fingers/knees/wrists/shoulders/ankles etc)...but never need for Fibro....Fibro is Nerves being what I describe as being "Oversensitive"...people with PMR need Prednisone for inflammation.  If this is all your GP offers you, and doesn't even suggest a Rhuematologist referral (who is the doc to diagnose ALL of these condidtions)..then maybe, if at all possible, you shoud maybe trying to find a GP who is willing to listen to you, and definately refer you, and I do really feel a Rhuematologist over a Clinic, at least until you get your diagnosis, and started on the correct treatments.....can you afford to see one privately, even for the first couple of appts?......Bron 
    • loxie
      loxie bronwyn97278

      Posted

      Thanks Bronwyn.  It did seem strange to me that her first thought on medication when she mentioned fibro was steroids. I definitely dont intend to take prednisolone again, it was nasty.  I had a cortisone injection in my foot for Morton's Neuroma - it hurt to hell and back and the effects only lasted about a week.  They did offer injections for my thumb joints which have OA but the horror of the previous painful one was still in my memory so I refused and just use anti inflamm gel and ginger for those.   You're so right about fibro not being inflammatory and due to nerve issues - if i read articles from 'knowledgeable' doctors they all mention that its brain receptors overacting etc - ie the cause of the pain is not at the site of the pain, it's brain messages, so what use taking NSAIDs etc. Can I ask what is ESR? I'm new to all this sorry.
    • jeanne81532
      jeanne81532 loxie

      Posted

      Hi Loxie, Bron might be asleep now as she's in Oz, so I'm taking it upon myself to answer your question! ESR is Erythrocyte Sedimentation Rate. The other blood test that shows inflammation or infection is CRP which stands for C-Reactive Protein. Well, that's my brain severely tested for the day! Jeanne xx
    • loxie
      loxie jeanne81532

      Posted

      thanks so much jeanne.  I get referred for tests and never really know what theyre testing for - my docs do seem to like to keep the whole thing shrouded in mystery smile  I only know theyre testing for thyroid function and sugar/cholesterol as its a 'fasting' test but other than that i havent a clue.  Trouble is our group practice is so over subscribed we get a scant 5 min appointment and never enough time to really talk through things, always being rushed out of the door.
    • jeanne81532
      jeanne81532 loxie

      Posted

      You are welcome Loxie, I was a registered Nurse till last year when I had to finally give in and accept I could longer fulfil my role. I then had a temporary contract as a Ward Clerk, for a year, which I enjoyed but which also eventually became too much and I'm now claiming ESA. I already get PIP, and have an assessment for that tomorrow, from which I'm hoping my rate will be increased to the higher as my condition has deteriorated since my original claim. Anyway we shall see. You can always pm me if you want ask any questions and I will try to answer them. Jeanne xx
    • loxie
      loxie jeanne81532

      Posted

      so sorry to hear you had to give up your profession because of this, I work in surveying and am now office based because of the issues but even sitting at a desk is hard and becoming more difficult.  I really cant afford to lose my job as I have a large mortgage to pay so I'm determined to find a way to ease the pain and continue working.  I guess what annoys me more than anything is that there doesn't seem to be any 'real' cause for this conditiion nor any 'real' treatment options, it's purely symptomatic, ie no underlying disease in many cases.  If only somethng really effective - for [u]all [/u] could be found to reduce the symptoms, many suffereres would be able to get back to an active life.  I guess I could understand and probably cope better if I'd been diagnosed with a recognised disease instead of all this non specific 'pain syndrome' stuff.  I haven't got my head around it restricting my life yet, I'm frustrated and grumpy all the time and feel like a total wimp at times.
    • jeanne81532
      jeanne81532 loxie

      Posted

      I'm sure you're not a wimp at all, and I understand your frustration and grumpiness. I have now accepted that my life has changed and I can't do everything I used to. I find the best way is to see how I can do things differently. Small adaptations can work wonders. I have a perching stool in the kitchen which is sooo helpful. I can now do washing up or food prep much more comfortably. Not much I can do about brain fog unfortunately! xx
    • christine26761
      christine26761 loxie

      Posted

      Hiya Loxi and Jeanne,  just a quickie to let you know what my specialists said to me years ago at diagnosis..that Fibro actually started from a shock or trauma..even an op...to your system....I'd had that trauma some 10 years earlier..always at the dr's with some new symptom for all those years then a Rhumatologist.  diagnosed it, but I've gotta say, once diagnosed I felt like celebrating..finally it had a name it was real.,.i felt validated....next was researching and dealing with it, once finally on the right meds-lot of trial and error there, like us all.....I only have the bad flare  ups and tiredness at times... some 22 yrs later. I've gotta say that giving up my career was a grieving time for me...trying to stay stressless and positive has become my mainstay....and wonderful blogs like this..just amazing..be blessed ladies..have yourselves a beautiful day...:-) xx
    • bronwyn97278
      bronwyn97278 jeanne81532

      Posted

      Oh so thankyou Jeanne....loved the fact that you let me have my Sleep...really needed and enjoyed it cheesygrin....hoping you are now having your's.....xxx  Bron
    • bronwyn97278
      bronwyn97278 jeanne81532

      Posted

      Just read re you having to give up your Nursing too....that was a Really frustrating thing for me, as we not only spent time having to study for same, but it also gave me so much satisfaction.....I even feel at times that if I hadn't got sooo bad sooo quickly (even did take 6 months off at first)...would love to be still working at what I enjoyed....I had always planned to work (even part-time) until at least 55...but didn't get much past 40....this in itself can be an issue, as it not only deprived me of my personal satisfaction, but affects our superannuation/further financial gains etc, and has put more pressure on my husband....even to the way that we wanted to spend our retirement, with travel etc....thinking we would have more to live/retire on.....so be it.....Bron
    • bronwyn97278
      bronwyn97278 christine26761

      Posted

      Morning Christine.....you've said all that I was/would say...the rollercoaster of testing/drug trials/finding that diagnosis, and then actually feeling like celebratiing after being validated....EXACTLY....and know that we can,  and do, know how others feel and help them through the origninal steps....I would hate anyone to have to go on that rollercoaster which I did...that's where I got depressed....and now know that I am NOT, as others' now believe and support me......xx Bron
    • christine26761
      christine26761 bronwyn97278

      Posted

      Hi Bron, the weather here in Tassie was -3 this morning brr...gloves have been sent...yay.....we have aircon like most  people in Aus..actually we bought it for the hot weather believe it or not...yes, in Tassie it can get to 40 degrees cel...sometimes in summer...(but with less humidity than mainland) no one believes that one but...lol.. really cosy inside..just got home from lunch out after our weekly prayer meeting...grrr...very cold..just put coats, hats and gloves on...I really like the cooler weather, but the Fibro and OA do hate it so....I just couldn't warm my hands up no matter how many pair of gloves I wore..Sooo, I really have high hopes for these new gloves...yes I'm like you there, just really really feel for  those poor precious ones going through the earlier stages of the Fibro,,,anything I can share to help through my own experiences...helps me too.   I find it very interesting though,  that things are still the same with meds etc for this Fibro...after all these years ...

      Anyways it's netflix movies for me and decafe for the rest of my day...in my electric chair...lol...I do feel sooo blessed to live in such a country..have a nice day bron...:-) xxx

    • tiff74
      tiff74 christine26761

      Posted

      I cried the day my illness was given a name, felt iIwas ggoingad before was on the verge of a bbreak down, x
    • tiff74
      tiff74 christine26761

      Posted

      This is really for all to read but didn't know where to post it, having NADbrain fog today , aand I ccan't feel finger tips.

      So appolagise for writing and spelling, just doesn'twwantto do what iIwwant this jhastaken me ffifteenins to write and still has mistakes, itsy little girlsbirthday ttoday, so going PFFlime to rest for ccelebration later xx

    • christine26761
      christine26761 tiff74

      Posted

      Hope you have a great celebration with your daughter....grr brain fog...I celebrated too to finally be validated meant sooo much to me too.. have fog free, lovely day tiff...be blessed.,:-) xxx
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