Widespread O/A and Fibromyalgia

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Hi, I am new ti this forum but am feeling very much alone right now. I was diagnosed with cervical spondylosis 8 years ago at aged 42, but eventually started having further pain in my lumbar spine and then hips. I had further MRIs which showed I had OA in my lumbar spine and hips. The results also mentioned bursitis in my shoulders and hips, facet joint disease and synovitis. Yesterday I had an Isotope full body scan due to further pain which has meant I am now signed off from work and as u thought, I have arthritis in hands, feet, knees and elbows. On top of this I am also suffering short term memory loss, poor concern traction, extreme fatigue, sinusitis flare ups, migraines, constipation, dry skin on face, scabs on my scalp , low mood, palpitations - I feel so frustrated and can't bring my pain under control anymore. I am currently taking lyrica, hrt, a beta blocker and frusomide for water retention. I was previously prescribed tapentadol and also butrans patches but didn't want to be on drugs like these. I now take cocodamol for pain relief although these do not see to work. I'm sorry this post is so long but I feel very much alone right now as I feel all I do nowadays is complain about pain to my friends, children and husband and I don't want to pull them down too. Does anyone else suffer like this? Thank you for reading my post

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  • Posted

    Hi Paula, Welcome to the world of Osteoarthritis and in no way since god made little green-apples, are you alone. There are a 'lot' of us suffering with this crippling ailment, some worse than others. Firstly, is to get yourself settled on a painkiller that will give you some relief so you may succeed in dulling the pain for you to function at work and during rest. Your Doctor is the only person who can full-fill this option, over the counter drugs won't touch that type of pain.

    Some of thse complains you mention are side effects from the drugs you are now on; you will learn how to cope with them over time; as too, with the constant Arthritic pain. None of us sufferers are in no way experts in controling Arthritic, we just cope the best we can as you will certainly discover.

    Once you have found that tablet to relieve your pain take it as the Doctor prescribes and do not listen to 'so-called' good advice from peolple who say 'oh these drugs are addicting, don't take them'. These tablets are for your pain and not there's.

    Good luck Paula, take care and you will get relief if you follow your Doctors advice. Even I do................Ron.

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  • Posted

    Hi Ron, it's good to hear from you and to not feel so alone. The pain killer I currently stay with is cocodamol and I have been on pregabalin for several years but the fatigue and severe memory loss is what bothers me most. It may very well be age related due to menopause. I saw my consultant today and he gave me a a steroid shot and discussed the option of putting me on Methotrexate. I have researched this drug previously as a friend of mine was on it at 26 yrs old with bad side effects.

    I also had some blood test results - CRP which is 14 but should be below 3 and ESR at 61 which should be below 20. Are these markers high with anyone else? Thanks

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  • Posted

    Hi Paula, I read your reply and took up more on the drugs you have been prescibed. In reference to the Co-codamol you take are in no way is a succeesful painkiller for your range of Arthritic pain, as it's a mild form of painkiller. I take same with Dihydrocodeine, which is an Opiate, which is normaly added to the former or Tramadol. I did take Pregabalin once but did not feel they helped the pain and the Methotrexate is more for Rheumatoid Arthritis. You do obviously know your tablets well since you said you do research them including the Pregabalin which is usually prescibed for other ailments than Arthritic Pain.

    You do not mention the Beta-Blocker but they too do cause some memory loss according to the side-effects. The Codeine you take does similar. I suffer Osteoarthritis in all major joints but mostly in my hips and knees which are very very painful and taking Dihydrocodeine and Paracetamol, seperate, ever 4 hours gives me relief somewhat hence I am able to relax better which then releases me from this horrid pain.

    If you ask your Doctor for a stronger painkiller it will indicate to him the previous tablets have no effect on your painfull Arthritic Joints; if you receive a negative response, change him for another, as I did..Take care...........................Ron.

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  • Posted

    Hi Ron, thank you for getting back to me again. The cocodamol I take is 30/500 plus I was on butrans patches of which I have only just come down from. The pregabalin was prescribed as I have neurological encroachment from my degenerated discs and bulges in my cervical spine which causes numbness and tingling lying plus a crawling sensation over the back of my head. The Inderal I take which is the beta blocker is for high blood pressure and also used as a migraine preventative, also frusomide for fluid retention in my legs and feet. My migraine and memory loss started when I was in my late 20's and at the time was just passed off as stress. The consultant I saw yesterday is to review all my drugs on my next appt. I also have high cholestrol which was up as high as 8.1. I am not on statins however as my gp is always concerned about me having too many drugs in my system. I remember previously now you mentioned it being on 10mg dihydrocodine but don't recall it helping me much. We all differ in the way we react to certain drugs I guess. I am wondering too why he wants to use Methotrexate? I am wondering if it was due to my blood test results or what showed up in my Isotope scan which he just said something mild showed up in one of my ankles but did not know what. I am going to email him as the more I think about it the more questions I should have asked. I have to keep asking my husband what the consultant said due to my short term memory! Anyway he gave me a steroid shot which I hope will help. Did you have MRI scans to determine your diagnosis? You take care too, Paula
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  • Posted

    Hi Paula, All that you say in referrance to your medical ailments seem to be on-going and your Doctor seems to be acting in your interests. Some poor souls I read can't get off the starting blocks in some cases. Understanding your treatments seems to put you in a better perspective in understanding your treatments etc.

    I was diagnosed with a Spinal complaint in 1968 while serving in the Navy and was advised it would, over time, lead to Osteoarthritis, which it has. After trying a number of various analgesics I settled on Dihydrocodeine 60mgs 4x daily; too, with Amitriptyline at night for sleep and to enhance the DF118.

    Over the years the Arthritis has increased now rendering me more incapable of the mobility that once was. Although I have tried several other Painkillers I always seem to revert back to Dihydrocodeine that, without a doubt, gives me adaquate relief for me to function daily.

    What else could an Arthritic person want.

    Hope you get all sorted Paula and keep the Doctors right!..............................Ron.

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  • Posted

    Hi Paula, Thru' all you have written you certainly don't seem vulnerable as your ideas and actions are exactly what a person should do. I'm sure many a person would take their hat off in respect for what you have achieved thru/out your earlier part of your life. Do you have a hobby? A real hobby I mean, something to get involved so you may lose yourself for a few hours. It doesn't mean even leaving the house as in many cases with us 'patients' we cant.

    I took up Genealogy as a hobby many moons ago,and I now search for 16th & 17th graveyards and churchyards with the help of the computer. Within a day I transcend myself off in time and forget todays pains for a spell giving me that breather we 'patients' all need.

    I always think a hobby finds you, Paula, so just maybe, there is one there for you. Take care ................Ron.

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  • Posted

    Hi Ron

    Sorry it has taken me so long to respond. I would have liked to say I was sitting in the sun in a hot country, but I wasn't. I was feeling very low and extremely exhausted all the time so was struggling to look after myself. I just couldn't shake the extreme fatigue plus other symptoms I was feeling. One thing I have now realised on my rheumatologist letter is I have CFS/ME. I have read and re-read the symptoms and I have every single one of these. I think it dates back 3 yrs to a campylobacter infection I had which the hospital didn't test me for to begin with. They sent me home after 5 days and I was more ill and back and forth to a and e. Eventually they discovered the campylobacter but I had also contracted c. Difficle in hospital. Shortly after treatment was when symptoms other than arthritis begun. I have been signed off work for up to 3 months.

    I think it is great you have found a hobby and one you are enjoying so much. My hobbies included wildlife, walking and going out to dinner with friends so I will have to think of something else to do. I was hoping to meet people on this site who have a similar illness so as no to feel alone but I guess I have not made much effort yet. I hope you are keeping as well as you can. Paula

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  • Posted

    Hi i know Im a bit late joining this discussion! but i know exactly how you feel about feeling like your just complaining all the time. I find myself just staying alone whenever possible because i get so sick of trying to explain my situation its easier to just not bother trying. Plus somehow i can manage my pain better in peace and quiet! Now my son has gone off to Uni, i spend 99% of my time completely alone and have to say - i think it has actually helped in a strange way. it means i can concentrate on myself more without having to worry if i sound like a whingeing old bag!!

    I would say that from the sounds of it, you are very much more poorly than me, I am 44 and have severe degenerative joint disease of the spine, OA and osteophytes (well we hope they are just osteophytes - have just had a CT scan to check these bone masses to see if theres anything more sinister going on)..

    but I DO have a lot of the other symptoms you describe - fatigue, sinuses, constant blocked nose, headaches, constipation and IBS, dry skin so bad that theres white dust everywhere!, my memory is terrible, i get constant skin infections like whitlows and boils, its like i just cant get myself right! I had norovirus (gastroenteritis) twice in Feb this year and since then I have IBS for the first time ever plus all these coldflu type symptoms during which my joints are agony!

    So I know just how you feel it is so frustrating not to be able to get on top of it - I also have bipolar so I know about the low mood, too. And all the different meds - i take meds to counteract the side effects of my meds!

    Take care and private message me anytime if you feel like a chat x

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  • Posted

    Hi, I have OA in my spine and pelvis and am now being checked for rheumatoid as I have so much pain where I shouldn't. I also has ulcerated colitis, the tablets I'm on I'm not allowed out in the sun at all, but that's illogical, I work and mostly outside so I go out side but wear factor 50+. I'm still really dark! I've been so down with the pain but nothing helps, I walk lots as this helps while I'm walking but as soon as I stop it's back. For some reason having my period makes the pain 200% worse. You're not alone, I don't tell anyone about my pain, as I live alone and I always think my friends are fed up with my problems. My dogs keep me going, or I think I would really just give up. My teeth are now breaking and after paying out so much for my medication I just can't afford a dentist. Oh well, life goes on! We really need to start telling these docs whatever they are pumping us with doesn't work and is causing other problems! Lol I hope you have a good day today.x
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    • Posted

      Hi Lindsay, well I understand how you feel with having to pay for lots of drugs, I am on so many now that I pay £10.40 monthly and this entitles me to as many drugs that I require - you can also pay 1 yearly amount if preferred. Much more economical for me. I am now on a drug that I have to wear factor 50 if I go out in the sun called methotrexate. I was checked for RA and diagnosed with undifferentiated connective tissue disease - the names they now have for illnesses lol. Regarding your teeth, I found a nhs dentist and I had a check up and clean and it coat me £18. You must go and get them looked at - they will give you a quote and will let you pay off for any major treatment. I am still in my bed as feel so exhausted from doing nothing, it's just part of my condition. I am still signed off work at the moment but yes, life goes on! I'm pleSed you have your dogs to keep you company. I have a cat as I wouldn't be able to look after a dog but animals are very therapeutic and loving. I hope you have a good day too, Paula x
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  • Posted

    Hi.  It's good to know that I am not alone.  I am 52 and live in the United States.  I don't know I became afflicted with fibromyalgia and osteoarthritis in all of my joints, but I guess it really doesn't matter.  I have gone through a dreadful time since about last December in even getting the diagnosis.  Ironically, the winter here last year was the coldest on record, and while I try not to think about it, I know that it is fast approaching.  I find this condition so difficult to deal with.  I don't know what's worse the pain I experience daily from the pain especially in my neck down the spine, and my hands, or the fatigue that is associated with the condition.  At the moment, my pain doctor is prescribing nortriptylin, but the dosage has increased twice in the last couple of months, I also use hydrocodone when the pain is especiaaly bad.  I do find my fatigue difficult to deal with,  Unfortunately, I gained about 25 pounds, and while I endured 3 months of physical therapy, it didn't seem to help much. usually  One thing that I find extremely helpful is listening to a cd in connection with relaxation therapy, It is put out by healthjourneys.  For some reason, it really does relax me, and quite often, puts me to sleep.   It is intersting to note that I was in perfect health a year ago.  Then I spent a month in Australia, and when I returned, shortly thereafter, my symptoms developed.  Obviously, I wonder if there is a correlation between the two.  In any event, it's comforting to know that I am not alone in this struggle.
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  • Posted

    Hi.  I have osteoarthritis and fibromyalgia in all of my joints.  True, it took a long time for the doctors to come to a diagnosis, and I think that the only reason that he told me was because I asked a direct question to my pain doctor a couple of months ago.  I have a couple of questions, namely, I was in perfect health before I spent a month in Australia.  My doctor says that we may never know how I acquired my diagnosed illnesses.  I wonder if anybody has any idea as to what causes them?  Also, is there much chance that I will ever feel the same way I did a year ago?  I would very much appreciate any ideas concerning these questions.  Thanks.
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  • Posted

    Hi. I've just joined the site today and yours being the 1st post I've read, spells my life out quite well. It's a little spooky how familiar I felt reading your situ!. At 47, I haven't worked for 6 years now and tend to rarely go outdoors (Variety of reasons for this including having moved to an area through husbands work where I dont know a soul). Bored doesn't begin to describe the days. Unfortunately, I keep adding diagnoses, such as CS, OA, Fibro, Asthma, COPD, RA, now brain disease! It seems the more tests the more they find! I hope by joining you don't feel quite so alone. It's sad these things seem so common and yet we feel so isolated and lonely. I've read your replies with great interest and the lady who talked of getting a hobby is spot on, altho I'm still looking for mine. Here's hoping we all get something out of joining and sharing experiences, knowledge and helpful tips. Chin up :-)

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    • Posted

      Hi Lindsey.  Just received your note, and wanted to respond to it.  I live in Connecticut, and although I wouldn't wish my situation on my worst enemy, I strongly believe that it has actually, in some bizaar way, somehow made me a better person.  By which I mean that somehow it has definitely made me more compassionate to others.  I heard somewhere that a life altering situation like ours, either makes a person better or bitter, resentful etc.  In some crazy way, in some sense, maybe I am blessed by it.  Sure, it would have loved to learn such life lessons in a much easier way, but I guess that I am trying to make the best of the cards that I have been dealt.  Hence, I am starting to work as a volunteer with Planned Parenthood.  Fortunately for me, it is only about a half hour from my house, and very accessible for me to drive there.  Of course, I told the director that I cannot guarantee that I will be able to be there every week, but I am a person driven by passion to causes, and definitely believe that the experience will be good for me.  Besides, even though it will soon be election time, I have absolutely no desire whatsoever to campaign for anybody.  I told the coordinator that I want to start at 2 hours per week, which I hope to do.  Of course as I write this it is the end of August.  I happen to live in New England, and found the pain last winter absolutely relentless.  Unfortunately, while I never loved the area, I have no viable alternatives.  I might suggest that you think about whether you have any passion about anything in particular.  I've never been married, but from what I hear, couples often have similar interests.  I read that you and your husband moved to a new location.  Perhaps you can google something like volunteering for nonprofit organizations, and see if one might spark your interest.  That way, you are not put in a position such as a job which requires your presence.  I just have a couple of other ideas like possibly volunteering in connection with a church or hospital in a way that is flexible.  The only other thing I can think of at the moment pertains to taking a course on line.  Personally, I was educated in the traditional way, and don't think that the internet was even around at that time.  True, I would think that a course might be stressful, and God Knows, I wouldn't welcome stress for myself, but it might be something to consider.  I hope that things work out in a more positive direction for you, and look forward to your response when you feel up to it.
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    • Posted

      Hi Lindsay and Mary, I'm so sorry I've not replied sooner but I am totally exhausted but finally relieved to know I'm not alone with all my symptoms and diagnosis. I understand the COPD well as I've been having mucus on my chest and coughing all the time and had a strep infection. I have also been diagnosed with Undifferentiatec connective tissue disease - like RA but without a positive ANCA test. I'm now on Methotrexate too to add to the list. Brain disease too lol sorry but I've not had that one yet :-). Sorry, you just have to laugh sometimes. I'm so pleased we have all found each other. I'm going to watch a movie now but will catch up properly tomorrow with you both. Take care x
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