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Still unwell!

Hi guys

Hope well here I am 6 months later and still unwell had scans on most parts of my body awaiting one on my tummy and a colonoscopy.

So far nothing has come back as nasty thank God. But my bloods show lots of infection and inflammation going on. Doctors given me a course of anti biotics incase it's my sinus again. My rhuematoid guy has done an ultra sound on my hands and because there is no sign of anything bad he not willing to change my meds. He said I've got something else going on that is flaring my RA up.

Wants to see me in a month n meanwhile put me on these patches, omg I am not going to take them they frighten me to death. Butrans patches ! I had a very bad experience being on tramadol and not willing to go there again. Has anyone had experience of these? Because I'm having trouble with my tummy etc these bypass it which is great, but I don't want to be taking such bad pain killers when all it's going to do is mask the problem rather than finding a solution.

My RA has never been so painful, surely I shouldn't be in this much pain . But it's finding out what infection I've got going on is the problem.

I have suffered with thrush in the past with being on anti biotics , had one treatment for that. Has anyone had this situation and could that be the infection that's causing my flair 6 month long flair up.

My body my muscles hurt my glands keep coming up and hurting, my throat is constantly sore .and I'm exhausted all the time. They gave me a short course of steriods which didn't work their usual magic which shows I got an infections going on.bit instead they broke me out in a dark red rash which still hasn't gone, so that's weird too.

If anyone has any ideas or this rings any bells please let me know as it looks like the doctors n consultants are running out of ideas.

He did say with being on metho I could have bacteria in my gut which also could cause this flair up ! Has anyone heard of this?

Sorry to go on guys , but I'm trying like all of us to fix me.

Love Dee

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Sorry darling i can't like your post as your so ill. I don't have any answers for you so i am sending you some gentle hugs.xxx

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Ahhh thank you xx right back at you

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Hi sending you thoughts to get to bottom of this for you. Sounds complex and hopefully docs will get to bottom of things .they may go back from scratch and start again best wishes to x

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Yes I think it's what they need to do to but getting them to do it is a different matter .as they don't communicate very well between doctors and consultants. They do but it takes weeks n weeks. Ahh thanks anyway xx

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Know how you feel it will get you down .happend to my kids late mother .diff docs coming and going etc took her a long time etc to get to bottom of it in the end docs went back to drawing board and it was a simple blood test they never thought it would have been that .🤞for you x

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You know I feel the same it's something they have missed or not thought of. Going back for repeat bloods next week n will make another appointment. Thank you

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Sorry to hear how unwell you are, have they ruled out Epstein Barr Virus. Someone very kindly explained this was the name for Glandular Fever. My brother in law had it a many years back and was very ill for months with it. I do hope they get to the bottom of your health issues. All the very best. X

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Yes never thought of that I'm going to mention it next week .as my glands n my throat permanently sore . Thank you for the suggestion. X

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Cant help but sending you positìve thoughts and a hug. I feel for you. X

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Ahhh thank you xx

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Sorry can't help but sending hugs xxx

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I don't but my old mum used Butrans and was fine she had severe Oestoporosis and spine fractures.I do know that after a while she devoped an allergy but it was too the adsive, so they were cahnged to another brand. One way of looking at them though is they might give your body time to try to heal itself and I don't mean like hocus pocus magic wand but out of pain can make movement easier and thus the downward struggle fall back a bit. It does sound like you've got a lot going on and so really how can they make anything worse? I do wonder have you been asked about or tested for Pernicous Aenemia, Glandular Fever or Thyroid issues ? But to be honest I think sometimes the experts don't know its down to best guess and hope. I really do hope you find some answers as it is always a worry when these things drag on. Best of luck x

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Thank you. At least I know now of someone who has been on those patches. I may give them a try but I'm thinking of asking for blood test for Glandular fever , I've had thyriod done and that was ok. Like you said I think it's alot of guess work n a process of elimination , just taking so long. N yes my body could do with a break from all the pain.

Thanks for your reply xx

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Please be careful of the Butrans they can be addictive. There is another forum you can join called Pain Concern and many people on there use them. I did ask my Doctor for some, as oral opiate drugs make me very nauses and I though they might relieve the OA in my lower back, I have a curvature of the lumber spine and causes me more pain than anything. But further investigation put me off. I am currently waiting for an appointment at the pain clinic. Have been waiting months ! Lol. X

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Hi that is exactly what I've found I know everything has side effects if we read them all we wouldn't take anything but these worry me more than anything I used to take tramadol and the coming off them was one of the worst parts of my life and I said never again. Think these are worse. I'd rather they got to the bottom of what the hell is going on rather than more very dangerous pain killers. It even says your not to get hot incase you absorb more than you should or not to over exert yourself as same thing may happen . I would litrally worry my self to death. Try telling that to me when I'm rushing to work in the morning ! Lol

Thanks for your reply xxx

Do I have the right to say im not taking them or do I have to? I'm not sure about patients rights

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We are all different and of course react differently to the drugs and it's our choice to take them or not. It's best to raise your concerns when you next see the doctor who prescribed them in view of your reaction to Tramodol, he can then fully explain why he thinks they may help you. I cannot function at all on Tramodol. I take Naproxen and paracetamol. Naproxen with or after food, I also take a PPI, lansoprazol. No side effects and not effecting my kidneys. They are NSAIDs so help with my RA pain not so much the OA. I take them twice a day and if I forget my goodness I soon know. Because of this my GP is happy for me to take them. It's a balancing act sometimes. I had to see another doctor in the practise last year and she was horrified I was on them and put me on amitriptyline they turned me into a zombie. I do hope they can find the root cause soon. Take care. X

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Yep I've been to 3 different Chemists today 2 said take them one said don't. I just want an answer to What is going on in my body. At this rate I'm going to go to the hospital at the weekend ive had more than enough. I tried amitriptyline god no didn't know what planet I was on . Not for me them. Xxx thanks for your help

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I'm so sorry you're having such a rotten time and hope that something is found to help you very soon. Huge virtual hugs

J

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Thank you xx

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Hi Denise,

Sorry you’re in so much pain and frustrating when you don’t have answers. I have no experience of your symptoms but have used patches in the past for a short period and found I didn’t get the side effects of the oral morphine. Hope you get sorted soon.. ♥️ Sarah x

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I know I'm litrally at the end of my tether I may end up giving them a try going to chat to My pharmacy guy he's very good. Xx thanks

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I’m so sorry it’s so rough for you, Denise. I’ll keep you in my prayers and hope for some resolution quickly! ❤️

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Thank you so much xx

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I'm sorry to hear you're still not well Dee. You asked if anyone had experience of Butrans patches. I do, although they were changed a little while ago to Butec, just the same, buprenorphine, just a difference pharmaceutical company that manufactures them. I settled on these after discussing my pain relief options with my GP & they really do help my OA pain. I started on 5mcg/hr & saw my GP at regular intervals for reviews, usually monthly, & to increase the dose 5mcg/hr as needed. I stayed on 15mcg/hr for a few months as it seemed to work well then I had a bad spell (I thought my RD was the culprit) & it was increased to 20mcg/hr which I've remained on. As with any med they might or might not suit you, the only way is to try but one thing I know is I didn't want to try tramadol, one of the first options given me, although my GP was aware of my opposition to it. She's of the opinion buprenorphine isn't as addictive as tramadol so coming off them should I need to shouldn't be as difficult or lengthy as tramadol.

A six month flare has obviously knocked the stuffing out of you. The most obvious thought is you're not at all well enough controlled but that doesn't appear to be the case. So, they need to be looking for the cause elsewhere don't you think? Have any investigations been done to determine what is causing your glands, sore throat & muscle issues? These are all indicative to you fighting an infection somewhere so have you had a complete blood count taken? Swollen glands could also be symptom of anaemia, muscle pain too, specifically iron deficient anaemia which is what I'm being tested for at the mo. Toxins accumulate when your red blood cell count is low leaving you at higher risk of infection, so I'd ask for a complete blood count first, see what that reveals. Following that more specific blood tests & if necessary gastroscopy & endoscopy would be ordered.

I'm on MTX, have been 9 years, & did question if that or other of my meds could be the culprit, as yet I've no answer. Nor if it's RD itself but I'm still waiting on some results, I should have a better idea in a fortnight. I do know though that it's not gut bacteria causing the problem as that's been proven to be absolutely fine.

I hope some of this helps & you find the cause of your problems.

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