I am really sorry folks but my sense of humour and support is not good just now so please excuse me. I feel so bad my interest in almost everything is going.
I had an awful time at the bone scan yesterday with my knees and legs being forced apart and over a plastic triangle for trying to get a better image. Then she decided not to do that way. I did explain my limitations but she didn't listen enough. Now I have several agonising strains and a solid tendon behind my knee. :-(. I have been unable to get upstairs and spent the night sitting covered on the sofa. Awful.
I am in such a state again of being immobile and locked in constant widespread pain and seizures and no one interested in my requests to change painkillers and anti inflams and I shall have to somehow get to see my GP who is great but reluctant to do anything without the Rheumy consent. I specifically said to GP and Rheumy I was anxious about six weeks ago I would be in that bad state of depression about the pain and here I am. I did try and preempt it.
I am writing a letter today to my Rheumy to ask if I can have my pain meds reviewed as I can't cope and can't wait for Enbrel to take effect and start it till later this month. I am not allowed any more steroid injections or oral steroids.
So please excuse me if I am rather absent and try deal with this awful time. All I want to do is sleep get away from the pain.
Neonkitty x
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Neonkitty
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OH Kitty, yes those meds need to be looked AT BUT your GP or better still Your local pharmacist can do this!! it is called a medicene use review.
Pharmacists now study for four years and do one year pre reg equals five years, Gps do six, pharmacists often know more about the drugs it is our specialism.
AHEM GP means general practitioner, though a good GP should know you and your meds well x.
No body ever gave me a a steroid limit.. I HAVE only ever had one injection, but several lots od oral,, but yes long term side effects are an issue, my medicene use review with a former colleague at a supermarket pharmacy got me my dexa scan.. he wrote letter of recommendation for dexa ,, win , win. pharmacists dont just advise on coughs on colds
, That aside am fed up of juggling my meds need enbrel or something will have been left nearly six months with nothing..!! my health trust just plays the move the deckchairs on the titanic game with waiting lists/ targets xx
I agree with you that pharmacists are better placed to talk drugs, but it does take rather longer than 6 years to be a GP. Between 4 and 6 years at med school, then 2 years foundation, then at least 3 years vocational training before can be a fully qualified GP. I know because my niece has just finished med school, so has been talking about her future.
mm sorry it used to be six years to be a dr(maybe hosp dr?), pharmacy used to be a 3 year degree now its four and one year pre reg so it has become five guess both professions have changed their studying/ qualifying time x
Hi Summer, thank you as always for your advice. I couldn't come back yesterday as I was so sad after reading the post from the lady who is quite unwell. I felt like a baby saying I was in so much pain when she obviously has so much to bear.
I haven't sent the Rheumy my letter as yet as I managed to get in with my GP tomorrow afternoon to ask him re possible change of drugs. I do think the pharmacists would have excellent knowledge on what I could take but I will see first what my GP suggests. I bet he will say ... Let's ask the the Rheumy. That's fine but the problem is getting in touch with her. The Rheumy staff are brilliant but isn't always a fast process getting in touch. He has faxed things to quicken up injections but it is slow going through the Rheumy department.
I just daren't admit how many steroid injections I have had. Yes they have been needed but I know I haven't been addressing the need to change to a biologic but I now have had to. Just wish this crazy pain hadn't returned before I started the Enbrel.
I very much hope you can get Enbrel or another biologic. It is so awful you are being meddled around. :-(. What is the next step for you?
Oh Julie, so sorry your feeling so crapola. How flippin inconsiderate of the scan woman, I've had the same in the past with X-rays. It's like they have a job to do and just don't listen to you. Sending you many gentle hugs my lovely and pray you get your pain relief sorted really soon. Love Janet xxxx
Hi dear Janet - Crapola here!!! That scan woman is not my fave person I can tell you. I feel very sore now as well as all the other usual seizure madness, and sounds like you've had much a similar experience. Grrr. I will let you know how the GP goes tomorrow re the painkillers. Thank you for the gentle hugs and lots back to you.
I had to take my very physically fit but suffering from early Alzheimer's 92 year old Mum to an audiology appointment at hospital today. We couldn't do the test as she has wax and needs syringing. Long story behind it all. When we returned to the residential home I thought she had settled, but she became uncharacteristically agitated and grabbed my hand and crushed my fingers in a rage. My worse hand of course. It could only happen .....
Julie that's rubbish, I feel for you. I was really hoping that the bone scan would be easy for you. Is it because they are worried about your bones that you can't have more steroids? I do hope you get through to someone today to talk about what else can be done, and have someone who can make you cups of tea and look after you as well. Polly
Hi Polly, thank you for your kind words. I don't remember being manhandled on my first bone scan in 2003! All was fine. I think my Rheumy does have concerns over the amount of injections I have had but also she wants to see if I need calcium or vitamin D.
My husband has been a lovely guy ... A real honey, with meals and drinks and cleaning and all sorts, but he has the tendency to want to take me out to treat me to try cheer me up and I prefer to be treated at home! Especially in this weather. I hate to disappoint him when I can't often go out at the mo. I will see what my GP says about painkillers tomorrow before sending my Rheumy a letter. I may not have to if he can change anything to help me.
NK x
Hi kitty sometimes the sofa is the best place I have sometimes slept there myself !, and even when v bad and bed was out of the question a padded recliner chair in the living room Its no fun I KNOW hope you get it sorted
Yes, summer ...the sofa has a wool blanket and throws over one arm end, and pillow tucked at the side ready for those times I have to snooze downstairs. Sometimes when I get into bed after climbing the stairs I say .... I made it! It is such an achievement sometimes. However unconventional, if we can sleep .... Doesn't matter where it is if we have to do it when it is the best option.
Hi,
I was so sorry to read your blog, and hear of your absolute ly miserable time at the mo, last year, i had a very similar experience with bone scan on my spine, it was agony, with legs forced into odd position for what seemed like hours. I often find myself sleeping downstairs, and honestly I agree with Summer, best place to be when things are bad. I do so hope you can get some better pain management, sometimes you have to make a little bit of a fuss, as i think when your depressed, pain levels seem to soar, and Gps however good, don't realise just how painful RA is. Have you been given Oramorph or MST morphine?
Kitty, the only thing I can say, is that Enbrel, is a really very good, fast acting drug and if like myself, you will find it helps beyond expectations.
Hi dear Jenny and thank you for your kind reply. I know I am not alone in being manoeuvred into silly positions for a scan. Ouch, our poor bods. Sorry to hear that. Sometimes you can do your legs/ ankles more harm (and I do ... Spraining them!) trying to get upstairs. Also difficult if you have a partner you disturb. So sofa often seems sensible. Poor long suffering OH's. ;-). (putting up with my woolly condom hat and boxer dressing gown! Not to mention my ice block feet!)
My plan is to say to GP exactly what you have said ... My pain levels are soaring with the depression. It is a bit of a vicious circle .... Pain/Depression. I am frustrated as I am sure they could change the painkillers for me. I can't sleep easily for pain though these past four or five weeks. I wish I had been taken notice of when I tried to preempt this, knowing that the crazy pain was going to return before I could start Enbrel.
My painkillers are Fentanyl 25mcg/hour and Paracetamols. The Paras take the edge slightly off the pain for an hour. The transdermal patch takes the stabbing soreness out out my tissues. Not enough. Diclofenac 50mg help me get out of the door when I need to if I time it well. They don't last long enough. Tramadol was the only painkiller which worked for me before Fentanyl but it made me bonkers. Falling asleep and Lucy in the Sky with Diamonds .... Kaleidoscope eyes! Tripped out.
Thank you very much, Jenny, for your encouragement for Enbrel. I cross my wonky fingers it works fast for me. I am so glad it is doing so much for you.
Love to you,
Neonkitty xx
Oh god this is awful Unfortunately, I can't do much but sympathise and hope these people start taking their responsibilities seriously. After you get Enbrel and are hopefully feeling much, much better you should give them hell for getting you into this situation. As Jenny says, biologics can work extremely fast and this might not be a lot of consolation but some hope at the end of this nightmare.
Aww you lovely girl! Thank you for all your kind words. Crazy choc humour too! (did you go get that gargantuan dark choc bunny in the post Easter sale?! If he's there on Saturday in my supermarket egg sale, he's mine!! I found a little lady hammer perfect for bashing him with!!) As I type I am just munching the last bit of my much smaller standard dark Lindt bunny ... His derriere and legs! :-). It is so delicious.
My GP has been a star giving me three double appointments and really he was doing the job of a psychologist, working though all my stress. Talking me towards a biologic but never being pushy, but he is respectful of the Rheumy and I think she has thought that my steroid would last me till Enbrel .... But it hasn't. The problem is the people at the hospital I have spoken to who I have told about my pain haven't seemed to have communicated it to her. It is now up to me to speak loudly! I should have said yes to the biologic earlier I know that. I would never have done that without this board and the fab people here whose encouragement, knowledge and support has been amazing. Not to mention the affection and humour!
Hope you are doing well on your antibiotics and hope you are getting a bit more appetite back. (I've got everything crossed too even if I may never be able to uncrossed things, knowing my seizing body!!!!!!
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Unfortunately, I can't do much but sympathise and hope these people start taking their responsibilities seriously. After you get Enbrel and are hopefully feeling much, much better you should give them hell for getting you into this situation. As Jenny says, biologics can work extremely fast and this might not be a lot of consolation but some hope at the end of this nightmare. 
Should I be checked more thoroughly? 
RA pain increases as day progresses
RA is running wild, there's not stopping it now. Suggestions welcome.
The vagueness intensifies!
How good should it get?
