Just wondering? (JW)

Just wondering if people think that because one has RA, Fibromayalgia or any of the many connective tissue diseases and complications that cause wide spread pain are all crazy, just pretending for sympathy, or just trying to get attention. The answers that I've gotton from pain specialists, and rheumys include: you must exercise, lose weight, change diet, are you taking meds correctly, you must move about, take swimming arobics,take P.T.. They will do or advise most things except give you medications that work, continue to work, or increase the dosage of pain medication so that they continue to work.!! Most pain meds stop working once you've taken them for so long. Most of the biologicals and dmards can either make you better, feel worse from side effects, both, or give you a completely new disease. Now, one would have to battle two illnesses. For 15 years, I've taken pain medication for pain, around the clock. If , I didn't, I could not function, or move. I cannot take biologic meds due to having been exposed to T.B.

So instead of slowing the progression of the disease, I'm basically treating pain and not the disease itself.. With the exception of steroids from time to time, and anti imflammitories.(asprin, and advil). I also will add Tylenol.

At least other diseases like a cancer, the doctors will give you large doses of pain meds without so much scrutny . It's like this illness (RA) means you're not really in pain. Or, maybe we need to really prove it but how.??

The real question is --- that I'm just wondering is it just me or does anyone else take this disease serious or know that it causes widespread debilitating real pain. It may be just me being tired of being tired and in pain despite pain meds. I guess it could be worse. Sorry for the rambling.

J 64

42 Replies

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  • Of course we do it for the sympathy or maybe it's the pain meds. not sure which. I also do it because I like having no life apart from going to work and then testing for the whole weekend so I can go back and do it again next week. I really enjoy not being able to do the active things I used to do, I also enjoy the fact that now, on one of the rare occasions I may go out for brunch, because that is really the only time on a weekend I may be up to leaving the house, I choose very carefully where we go as most cafes now have evil metal chairs that I cannot sit on for more than 10 minutes without being in excruciating pain. Yeah my family think I am a whinger. I so enjoy that the best of all.

  • Are you serious or just being sarcastic, Someonesmothe?. I don't know many people who feel that way. I do not. Maybe you misunderstood me, or maybe you think it's a joke!!. Good luck to you.

    j64

  • I was being very tongue in cheek. May be where I am at at the moment, but I am awfully sick of justifying myself to those who have no understanding what we go through, including family. I am in a similar place as you, only 3 years though, and nothing has worked or has given me very adverse reactions. I ahve no idea how you have done it this ling with nothing that is helping, I admire you for keeping on going. Drs just don;t seem to get the fact that I am nearing desperation stakes as I really can;t continue like this. I especially enjoy the go swimming. I can;t really understand where I am to fit that in. Not sure if you also work full time but it is very very difficult given the pain and fatigue.

  • Thanks for the clarity. I try to remain positive, and I have an understanding family. I'm not working now, it is too much.

    Good luck to you, and hope you find relief as well.

    j64

  • No problems didn't mean to upset you, I have very black humour now after what has gone on in my life. this is just another in the long line of life's cruel jokes on me.

  • Hi Juliette-64...

    I totally relate to your post...I often question, if I am being taken seriously regarding my RA. Like you I am told over and over again, I need to loose weight,,I suffer from breathing problems, which could be Weight , RA , or Meds related. Hello!...I absolutely know this..but my question over and over, is How??, when my mobility is so limited and quite a few of the meds I am on, have side effects of weight gain...Not to mention, I sometimes feel , when I go to see my Doctor or Rheumy, with another issue with my health, that I am not totally taken seriously..Often get told, it's probably due to your age, (I am 54 yrs old)which I don't think puts me in the retirement home just yet..And I have not been given the full facts of some of my issues..the most recent being, that I have been suffering from dry, gritty eyes..cotton mouth..and other issues, for over a year without any confirmation of what if anything was wrong..It was only when I recieved a letter,regarding an appointment, from my Thoracic Specialist, that I noticed the Term Secondary Sjorgrens Syndrome, that I was made aware of this diagnosis..When I next saw my Rheumy I brought this up..and apparently I had been diagnosed with this over a year ago..News to me!! as I was not made aware of it..and it was only then, that I was prescribed the meds needs to alleviate the symptoms, being mouth spray, to relieve the dry mouth, and eye cream for the gritty, itchy dry eyes..I had been suffering for over year before getting the help I needed..So, I ask myself, what else is there going on with my body, that I am not being properly treated for..

    And my pain meds only take the edge off the pain..I have been on several types of pain meds, which 9 times out of 10 do not alleviate the pain, they make me tired and I fall asleep, but the pain is still like knives are being pushed into me..I have stopped trying to explain, to family and friends how, I cannot deal with certain things as the pain is too intense as I feel they think I am exaggerating and as you say looking for sympothy..So I suffer in silence, and decline certain events, as I know I will not be able to function properly, then feel like I am being judged as a boring old fart, who is using her RA as an excuse not to socialise..When in fact, I would give anything to be able to attend or participate..Even getting ready to go and meet a friend for coffee, can be a challenge. It can take me up to 2hrs, just to shower, dry my hair and get dressed, because I have to take several breaks, to get my breathing back on track and to rest joints to ease the pain...

    I really don't think, anybody unless you suffer from RA, has any idea, of the many challenges we face just to do the normal every day things.

    But I/We re-live it everyday, as we remember the many things we were able to do so easily and quickly before we were stricken with this disease..

    So in answer, to your post, I don't think a lot of people take this disease seriously..

    Liz460

  • Thank you so much Liz for confirming what I've been feeling and thinking for so long. I've recently decided to stop saying that I don't feel well because people think that you're a complainer. I am refusing to go places with friends because I hurt when I move,walk,sit,and lie down. What is the point? I Don't want to spoil fun for others.

    So, yes we do have a lot in common, and thank goodness for this support group. I do wish you more good days, and restful nights. I truly understand. Good luck to you in finding the right combination of meds.

    j64

  • I am sick and tired of banging my head against the wall,because i am being told my bloods don't show inflammation and my hands are not swollen. I keep telling them that my fingers were very slim to start with and they hurt,but because nothing is showing they don't believe me. Its not just you,its a case of the they can't see it or read it from the bloods then they don't know what to do. Hugs from me.xxx

  • Hi Sylvi, I feel your pain and frustration. But if you feel pain, please don't let anyone tell you nothing is wrong. I feel that We are the "CEO'S" of our bodies, and we have to insist that the professional medical community listen to us.

    I hope you feel better, and get a definitive diagnosis. Good luck to you and thank so much for your support.

    J64

  • Hi Sylvi I to know only too well what your going through. I have had years of doctors and consultants not knowing what to do with me as my bloods showed nothing. Whilst in terrible pain and swelling in fingers, ankles knees ect. Even told me I'd Broken my finger when I knew I hadn't.

    So when my consultant retired the one that called me 'a medical enigma' I went to see a new consultant with yet another swollen finger. He said I'd got sero negative inflammatory rheumatoid arthritis and with that my bloods will never show signs of inflammation. You wouldn't believe the relief of just knowing I'm not going mad. Now I can move forward.

    Keep your chin up and keep on at them as I did. You'll get there. Hugs back xxx

  • Juliette 64 - as a newbie to Raynaud's, Lupus, etc., I found this to be a very shocking experience. So much so, I refuse to even talk much about it anymore. :-( now, I'm described as being "too passive" (duh) If one does not know exactly how to fit something that's not working, and u hold yourselves out as specialists and u can't fix it either, what does known expect the unknown to do? :-(

    Pain killers as u rightly said only masks the pain, it doesn't prevent, stop or cure. My battles has resulted in my being friendless - and I do mean that literally! So, I've found myself becoming a recluse. People can be terribly mean and horrible when they don't understand something - they either shy away from it because they feel awkward fearing they say the wrong thing or take the wrong approach and become very patronising, or even worse in my case through ignorance, they think u are attention seeking and turn their backs on u, choosing to ignore u and the seriousness of your plight. :-(

    This has been my own personal experience. Recently had a home bedside visit from a "DR" who came to psychoanalyse me. She wanted to know how do I deal with feelings that I have "hidden away" in a closet?" This was her conclusion based on the pain clinic team that I was "too passive". My response was simply: what's the point of speaking with people who don't listen? Then I said to her you are actually engaging in an activity that I do daily for others in trying to help them come to terms with their concerns. The difference is I listen. I don't then go off and write negative letters here, there and everywhere saying their issues are "in their heads" and need psychological help! I said to her: I really wonder if serious contemplation is given to the effects of such letters? The impact that it has on present and future care/treatment of the person concerned? Politely, I told her I am not passive: I am angry at the Consultant that started this whole thing: as a doctor he took the The Hippocratic Oath (Greek ὅρκος horkos) is an oath historically taken by physicians. It is one of the most widely known of Greek medical texts. It requires a new physician to swear, upon a number of healing gods, to uphold specific ethical standards. He is a human being, not expecting him to be perfect, but He never had the common decency to say I AM SORRY! Rather labelled me as having it all in my head. Only to find. Wallah, she is not a hypochondriac, she is actually telling the truth.

    Juliette64, I struggled to get this far, and had it not been for this group I do not know how I would have coped. Sorry to sound as if I've just joined your whinging party, but strongly feel that something can be done. Weirdest thing is I found after being with my GP surgery all these years they are leaned towards diabetic care. Lupus, Raynauds etc is all new to them. They are inviting me to join a group specifically set up now for future patients even though I honestly would love to, because I know they are other patients like myself, and I don't want another person to experience what I've been through, I myself don't know enough to be of much help to them. Haven't said no, but where do I start? What do I know about Lupus? Raynaud's Sticky blood? Etc I can only speak of my own personal experience and pray they glean from it. Any suggestions and help would be welcomed.

    Guess, they are trying to draw me back into society again :-)

  • Hi denden, well that's what this group is for. I prefer calling it"expressing my feelings" as opposed to whining. I will tell anyone, that unless you have walked a mile in my shoes or situation,"Don't judge me ".

    I'd rather have your EMPATHY, and a listening ear than to be judged about something they really don't understand "For Real". Good luck to you, and this group is here to support you.

    J64

  • Denden - my approach - and I am sure my RA isn't very aggressive or erosive compared to others here - is to take up invitations like the one your GPs have suggested. Don't anylise the reasons behind this suggestion - but I really hope you take it up. The reason I urge you to do this is because you obviously have a good analytical mind and have first hand experience of chronic illness in its many forms.

    It's great that they are asking you so try, if you can, to take this as a sign that they value your insights.

    Since having RA I have bust a gut to become a volunteer for two different organisations relating to health. I have to travel to do the training, have ended up coming home in a wheelchair recently. In airports I have got talking to my MP several times and told him about RA - it's variability, its impact on my life mentally as well as physically. He told me he has a few very forceful constituents with disabilities (not same as long term conditions of course) - one of whom pestered him into trying a wheelchair for 48 hours. It did help give him a better idea of how invisible wheelchair bound people become.

    When I get home again I usually take to my bed - presently trying to get over pneumonia. But it stops me from becoming too introspective and makes me feel I am turning my lemons into lemonade.

    I have ceased to care what my friends think. Yes I have lost friends because I speak about having RA sometimes and they don't like it. But I have gained many more friends who have autoimmune diseases which overlap with my variant of RA - and have also rediscovered old friends who live with chronic illness themselves.

    These new friends are a great source of delight and comfort to me. Some of them are from this community. I usually try and give people the benefit of the doubt now and assume they will want to know more, will open up to me if I am honest and open with them. If they don't then so be it - their loss! We are all human and fallible and many more people have terrible things they are having to cope with 24/7 than you can know if you don't push yourself to interact. It helps with the pain and makes the ensuing fatigue more worthwhile somehow.

    Twitchy

  • I have a real good Dr now. I switched to her when the first RA dr didn't seem to care or know how much pain i was in. The New dr immediately started on getting rid of the inflammation and gave a through exam whwr the first would hardly look at me let along check my joints for inflammation. The first dr I saw twice in 6 mos and he just sent me off in pain both times. Everyone is diff and responds to drugs different So what worked for me might not work for others. But I feel fortunate. Appreciating each day cuz I don't know how long the drugs will work. or if a nasty side affect will kick my butt.

    Sorry you are living w pain, I know it's terrible and wish Drs knew more and could find a real cure rather than a suppressing symptoms. Best wishes.

  • I am so happy for you, and I do appreciate your good wishes. Hopefully one day, attitudes will change regarding illnesses that are not always visable. Thank you Marsha for that information. I have been dealing with this illness for approximately 15-16 years now and have seen several doctors, lost 40 pounds, take low impact arobics, physical therapy,and pain meds. Maybe there has been some improvement, however I'm still in pain on a daily basis .

    I wish you continued success and good luck with your pain.

    J64

  • Juliette64 - I wish I could lose weight :-( Now that I've been prescribed steroids (despite telling them I have allergic reaction to NSAIDS and paracetamol, I'm doubly concerned. U see I was wheel chaired bound but since November last year - bed bound - fingers crossed temporarily. Another story in itself! (roll eyes) Any suggestions?

  • I went total vegan when first diagnosed, thinking I would eat very healthy. Lost 20lb but felt terrible in spite of healthy diet. Didn't need to lose weight. Went from 130 to 110 and looked like I was starving myself. Felt awful, joins inflamed plus lost all muscle from not being able to move well. There's a guy Padington, I think, in Australia that says he cured his RD w diet, etc. I contacted him via email. Didn't buy his CD but told him I had already gone vegan w no improvement and he suggested trying Hot yoga. There is a hot yoga place 1 mile from my house. 1) I hate yoga in general, 2) it was difficult to walk, let alone get down on the floor and back up again or stand on one leg. But I do like heat and it was winter and it felt good. I could barely do the poses but I went 3 times a week and started to regain some joint movement. I had to drink lots of water because you sweat a lot in the 100 degree room. All movements and poses were very slow, no aerobics, and felt like I sweated out toxics. I oint know if it's true, and if it would have been that the meds were kicking in at the same time but I gained some muscle back thru the yoga. I still hate yoga but it feels good to sweat from the top of my head to my toes.

  • Thanks again MarshaM, I too have lost weight, exercise, and the whole nine yards. Still have pain while taking pain meds. I think I will try yoga as well. I too have lost muscle tone, due to slowed mobility. I definately want to regain muscle tone back. I don't want it to become worse.

    J64

  • I have mixed feelings on this ,my first visit to the hospital I was told I had rd will always be in pain when I ask how bad will it affect me I was to I would end up in a wheelchair,came away numb ,my own gp has been great but I am reluctant to go on mtx drugs ,its other people that can dismiss the condition including a close family member that thinks I am making my self a victim to my condition as others have it and they are ok , you only know how you feel each day and have a rite to be taken seriously ,has I said to my family member if Its in my head surly I need help for that then,hope you get help soon, remember you are a very special person and need treating with respect

  • Thank you so much June.

    j64

  • One of my biggest sadnesses over this disease is how horribly variable the care for it is, and the understanding of it from just people as well as the medical world. I feel so lucky to have had a great medical team, who did listen and take me seriously, and spend time explaining things. So I really hate hearing stories like yours of when it's not like that.

    But I've had TB and it's never been suggested that that rules me out of taking biologics? Just that I would have to be checked first and if there's any evidence of activity that would have to be treated first. But I've never pursued that as I don't want to take biologics, and prefer to stay on traditional meds. So maybe you need to ask more questions about that - as you say just treating symptoms rather than the disease is not the best way forward. Also the pain meds themselves can cause just as many problems as any other drugs, so I treat them with the same caution as anything's else.

    But as for people's reactions - well that's a whole other story! You certainly learn who your real friends are. And because my disease is well controlled and I'm fairly stable it means that most of the time I do look and act normal, so when I'm not then people find it hard to understand because it's so different. And it's hard for people to understand that a big part of my life now is about managing the disease, so if I say I need to sit down, then I do need to! However, re the comments re weight & exercise and so on, my rheumy also pushed me on that in the nicest possible way and so I did make an effort and it has made a big difference. I also think that it's helped me in other ways too, as haVing a better metabolism means I tolerate the drugs very well now. but it's just a part of it all, and not the complete answer.

    Maybe you need to find a different medical team?

  • Thanks so much for the advice, and information. I agree with you 100% on your comments.

    Thanks again, and hope you have continued success with your management of psin.

    j64

  • Yes I'm with Helix on this matter of a good medical team making all the difference. Mine is and it isn't. But I'm looking into moving away to find a better one if I can just get well enough to initiate this!

    Where pain is concerned I'm a bit of an oddity because I can put up with quite a lot of pain - and therefore assume on here that others must have much more of it - which in a sense they do. What I've come to realise is that I've always had pain in my life - large amounts of physical pain and a certain amount of mental anguish too. So I hope this doesn't sound too far fetched but I've somehow come to embrace pain and acknowledge it as my friend. It tells me how to pace myself a bit (I'm really useless at pacing), it tells me when and where things are wrong and it reminds me that I'm alive - because on the rare occasion when I'm pain free I feel so euphoric - who would need recreational drugs for this kind of high?!

    The nature of the pain I'm in has completely shifted over my 52 years so it started with severe eczema and bouts of alopecia when I was very young. I would have great open sores and cracks in my knuckles and across the backs of my knees and insides of my elbows - even under my armpits and around my mouth and eyes. Now all this is gone, as has the RA pain - but it's been replaced by flares of excruciating nerve pain. I don't really distinguish - pain is pain - but am glad that at least these have all come in the form of flare ups and not been constantly present. Sometimes the eczema flares would go on for many months and my mum would bandage me up with plastic bags and send me off to school - having read somewhere that the sweat would help moisten my skin - bizarre eh?!

    My rheumy or GPs have no concept of the kind of pain I've put up with all my life. So I've taken it on myself as a guide and it helps me by telling me where it is and what to avoid doing. However the fatigue and feeling of profound unwellness regularly do floor me and that's something I can't easily come to terms with and find very difficult to get across to my husband, friends and my sons. They call me "the mother- in-bed" which implies that I'm lazy - which I find hurtful and try to fight - but end up back in bed again having overdone things. So I've got to learn to take the malaise of chronic illness on board now too.

    My rheumy podiatrist told me recently that I did well in not letting pain/ RA define me and I must never let this happen. I smiled and nodded but didn't bother telling him that pain in various forms has defined me to a large extent now and I don't care. As Helix says you find out whom your real friends are this way and as you say no one can tell you how to live your life unless they've walked in your shoes.

    Twitchy x

  • Hi Juliette64

    I agree with the comments posted, a good medical team is key. Having been in agonising pain to the point I wanted to cut my wrists off, no one medically was listening until I had a complete mental breakdown. I made a Dr's appoint and saw a very nice younger GP female who immediately took control. Unfortunately I did still lose my job and my home (home was where I worked) spent a year homeless. I now live in a different area.

    It has taken five years to now be relatively pain free (If I'm carefull).I have just started as a Volunteer giving back to the community and Medical team who have given me a quality of life that I can finally six years all told, now go out.

    I wish you well on you're journey, for me the right meds and good health care helped.

  • Dear Struthruth65, thank you so much for your helpful comment. You are a beautiful person, and I am so happy that you have finally found a good medical team who are listening to you and trying to help you as much as possible. I honestly wish you much success in all areas of your life, and good luck with a continued pain free as possible good life. You have inspired me, and again, thank you.

    j64

  • I so feel like that! Ive just been put on patches for the pain and thought in would be what I'd been waiting for but the pain isn't much improved. I went for an injection on Friday in my hip but a couple of days before had got up from my chair and heard a big click in my knee and really bad pain, so I told the nurse who said it could be OA ! but she did give me an injection in both hip and knee after bending and stretching my knee and hip in different positions Oh what pain!!!??? Would they do that if they really knew what the pain was like? I don't think so if it was them would they let anyone else do it to them? I don't think so. I then spent my 48 hrs "seeing to my own personal needs" and people phone and ask are you feeling any better? Because suddenly your ill or you must be in pain?? but that pain is a daily thing and when you've had enough you have an injection? and I wonder is it the injection or 48 hrs doing nothing that helps? but as soon as the 48 hrs is up your back to normal to most people. Sorry about my rant but it is difficult to explain to people the daily pain you are in and how it makes you feel. I would like to ask where has the OA suddenly come from? Is it age or part of RA? Either way the pain is no less!! Hope you are feeling better with the support from people who know how it feels x love to all and here's to a peaceful night?? xx

  • Fizbom, about your pain relief patch. The norm is to titrate up, so it's possible you won't feel great benefit just now but as the dose is increased so will the relief, assuming guidelines were adhered to. I "wear" ButTrans patches, started off with 5mcg/hr & it was increased month by month 5mcg at a time to maximum dose, 20mcg. Mabe your GP or Rheumy, whoever prescribed your pain relief patch, explained? This along with amitriptyline & NSAID has given me the near spot on relief for OA pain & use co-codamol 30/500's for breakthrough pain. If your pain isn't being covered do please let your team know, don't suffer on with it.

    OA can come on by itself, generally as we age, be a secondary condition,be a result of repetitive injury (I've had dicky knees since senior school & spend most of it with support bandages on) or as was with me diagnosed at RD diagnosis, I've had neck & back pain since around the time I had cervical spasms approx 10 prior to diagnosis, so about my late thirties. It's quite variable yet is usually considered to be general wear & tear of the ageing process.

  • Thanks that helps they said to take paracetamol as well I am on 10 mg Butrans patches but they didn't say they could increase them so I'll just keep going it just seems like an up hill struggle some days!!! Xxx

  • It's possible it will be increased in increments then if you let them know it's not adequately covering the pain. I've started to take my co-co's more regularly, particularly one day each week & don't want to become reliant on them again (I don't mean addicted!) so I'll soon be talking through my options with my GP. Do remember that it's best to keep on top of the paracetamol, it's more effective taking a regular dose & once it's found a level in your system should work as long as you continue to dose at regular intervals.

    One other thing that I was advised about my others here who have experience of BuTrans, I'm finding by the sixth day my pain increases, as if the buprenorphine is lessening or even run out, Sundays, the day befoe I change patches is when I'm taking a full daily dose of co-co's.

    I hope your injection kicks in soon so you have some relief.

  • Tanks it so nice when someone understands how you feel xxx

  • Thanks for your response and advice.

    j64

  • Hi fizbom, I ve been through exactly the same scenarios that you have described . The pain patch that was literally like a bandaid without medication. I thought I would die, just waiting for the meds from the patch to kick in. It never did!! Next, the injections; knee, back, thigh, finger, hip. You know the process.

    Thanks for your support. It must be universal. I'm on pain pills now. I must say it is better than the patch. It takes the edge off the pain. I wish you much success in your quest for a tolerable pain free existance. It does help to know that I'm not crazy, and it has actually happened to othets. I pray for the medical community to pay attention and listen to patients.

    Thanks again for your reply. Good luck to you dear.

    J64

  • Its nice to know you're not alone I feel like a hamster on a wheel some days and just wish I could get off! Feel as if I've not slept all night but at least others can understand even if docs can't. Hope it's good day for you xxx

  • Hi fizbom, maybe you could watch a movie, read something, or drink a hot cup of tea. You may feel better. I also take deep breaths to try and relieve anxiety. I wish you well, as I do ubnderstand.

    Good luck and God Bless

    j64

  • Hi julitet64, I know how you must feel, I have been on humira and enbrel same thing they work for a while and then you have to change to another. I am waiting to find out if I have been exposed to TB before I can start on Tocli infusions. I have another 5 weeks before I go to the respiratory outpatient, I have no idea what to expect or how they will know if I have been exposed to anyone who has TB? In the meantime I am going through really bad flare ups. Is it any wonder we become sarky at times. How do you cope just taking pain killers? I'm on steroids and the side effects from them are really bad, plus other mefs to help reduce the pain I can just about stay awake. The minute I sit in my chair and put my feet up to try and get the swelling down in my legs I am asleep. Rheumy and my GP both blame everything on the steroids and the reason the 2 TB blood tests failed quality assurance and now I have to have an assessment done. I really do wish you well and hope they can sort out the meds for you. Good luck take care. S xx

  • Hi Angle-delight: Thanks for your response and reply. I have been on steroids short term, I have had injections in my hip, back, finger,thigh etc.,whatever has flared at that time. I was on sulfasalazine a few years back, there was no difference in anything. I stopped and tried again years later, it made me severely ill. I took celebrity for years, and it took the edge off until it stopped working altogether. So, I've been to a few different doctors, and the results are basically the same.

    I was given a TB Tina Test on the arm, if your arm swells up in that spot, then you have been exposed and must be extremely careful with regard to meds that lower the immune system. So yes, I do take asprin and tylenol, and sometimes advil. The advil raises my blood pressure, and makes me retain fluid.

    I do fall asleep all the time from pain meds, but I honestly need them to move about and take care of myself. Thank you so much for your good wishes, and understanding. I wish you well and good luck. Thank you

    j64

  • Correction:I took celebrity for years. (SORRY)

  • Thank you for your response, When I asked my Rheumy biologics nurse about the appt she didn't say anything about having an injection in my arm, just that they would ask me questions such as have I been to any exotic places? Having an injection in my arm isn't a problem. I am use to injections from Humeria and Enbrel. I am unable to take regular pain meds due to taking warfarin. I am on steroids prednisilone Rheumy clinic is saying is the reason for the failure of two TB blood tests. I also take 30mg oxycodone twice a day which is slow release.

    I really do understand what you are going through, good luck, all the best. Sue x

  • Thank you Angel-delight for that information. I too take extended release oxicodone,10mg., every eight hours. It takes the edge off. The pain specialist won't consider raising the dose because I take a 5mg breakthrough 3 times a day if needed. The breakthrough doesn't work at all. Continued Good luck to you.

    j64

  • Why did you send this to me. This could have been sent to any person in this group. This is a support group. You sent a publication to promote your research. Your information did nothing to make me feel better. Rather, it was disturbing for you to use this forum to promote yourself, your research, or views. I know how to research information that I need. I am insulted. You are not a medical doctor and you should not be telling me what I should.or should not eat unless I asked you. You know nothing about my medical history and your advice / recommendation could not only be harmful to me, but also to others.

  • Z

  • This blog was posted three months ago. Why would you wait this long to respond, especially since you feel like your research is so helpful to others. Hopefully your paper is published, in the libraty, stores etc. This in my opinion, is not the forum for your research. Instead, you could have made reference to this paper on line.

    Those who wanted to go to your site could have done so, and vice versa. You have misused this site. I did not ask to read your research paper!!!!!

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