Hope you don't mind me venting. I'm so discouraged. I feel like being diagnosed with RA was like a bomb being dropped on me. I know my doctor is a busy man with lots of patients. I just wish he had more time, or felt more inclined to explain things more. It's like one day you're told you have RA, but where is the concrete game plan of how to handle this? I understand we'll be trying different meds and seeking to get into remission. But, there is so much I don't understand. For example, over the past 3-4 months he has run a ton of labs, a few x-rays and sonograms. He doesn't really explain the results of any of the tests so I try to figure out as much as I can online and here with you all....which has been a big blessing! I've had 2 series of cervical neck injections, for example. I can't get a real answer as to whether or not my neck issues are related to RA or osteoarthritis, and would the answer make a difference as to which direction we take to find pain relief and prevention of further joint damage. My knees are in bad shape. I have abused them over the years so it makes sense that the X-ray report came back showing osteoarthritis due to previous injuries and surgery. But at this point is RA affecting them, too?
I just wish I could get more communication not only about what direction the doctor wants to take regarding DMARDS, but isn't it reasonable to be able to get an idea of what to expect and how to respond when things are worsening?
Does anyone else feel this way? The bomb falls on you flying solo. To me it is so scary.
I don't know what I would do if I didn't have you all here and on the US forum I just joined. Thanks for letting me vent. Blessings to all.
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Radiogirl
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Yes I do feel this way. I got so sick at not being told stuff, or my concerns just being dismissed, that at my last appointment (this time gastro) I wouldn't leave until I was satisfied with the outcome.
I was polite, but when it started to look like I was being fobbed off I sprouted horns and a tail!
If you feel like you are being fobbed off, don't tolerate it. Ask what things mean, and don't take everything docs say as gospel...sometimes they gett it wrong. Mostly they're just in a hurry!
I agree but when I was diagnosed last year I was told the results, given a load of blood forms, a prescription and "see you in 6 months" . I was devastated. No back up, nothing. When after one month I developed pneumonia and had other side affects I was seen by another consultant and everything has been better. But I'm having side affects with MTX now so we'll see what happens
I am a Physio who worked on the NHS for 15 years. I now work privately. I also have r a. Bummer.
I can see it from both sides. I have just felt like I fish out of water with this myself. I often thank my lucky stars that I was a Physio and have good understanding because if I didn't I would be completely dependent on these short 5 min appointments with the rheumatologist to change my life!!
It can be hard to differentiate even with x ray whether pain is o a or r a. It can also be both. Poo. Best thing to do is everything you can to tackle it. Loads of tools in your tool box needed. Use all of them not just meds. I do pacing and splinting when I am in flare and good joint management when you seem better. Avoid stress at all costs. Eat clean. Have you tried a beany collar for your neck??? Just on bad days?
I am in the process of re changing my life to fit round my r a rather than trying to do my old life with r a. I fully intend for it to be as amazing as previously!
i congratulate you on what ur doing i was very fit till my knees started giving way. every thing hurts and as i have pain in my heels that go up the bks of my legs when walking on top of my ankles and knees giving way i end up in the floor i try and try im getting so fed up i dont no where to turn all the dr want to do is give me antidepressants thats does not mske ur psin go away it mskes you feel so dreadful z im under 5 hospitals and still not no whwre had a brsin scan march3rd as my head aches are so bad i get clustet head aches n9t on snything x as i cant take the tabs x they cant find them .im so fed up
hi thank you so much .im having injections nxt sat for my wrists. my friend ask to go london shes vern so aell looked after .i want to be refered to london they wont send me x xxhuggs
I also have r.a. And o.a.when I mention my neck all I get is it,s o.a. What is a be any collar and where can I get one.by evening I feel I can.t support my head cos of the pain in my neck.....thanks in advance for any info xx
That's how I ended up becoming an RA nerd - so frustrated and not being given the information I wanted that I went away to dig it up myself.....
However I've learnt that sometimes putting your energy into trying to pin down precise answers can be a bit of a waste. Yes experienced radiographers can see the difference between erosion caused by RA and damage from osteoarthritis. And that's important for the doctors in diagnosing you. But after that, for you now I think it's more important to work out how best to look after your damaged joints. What caused the damage is history. Although the probability is that cervical spine problems are RA and your knees are OA - ut it could be the other way round too!
Keep an eye on your inflammation levels to prevent further damage, but I agreee with Cindy that good joint management is the way to go now. Joints need to be supported by as healthy a body as you can, proper rest and as good a set of muscles as you can give them.
As for the future, you may need to be patient. This is a long term disease so can take time for your doctors to really see the shape it will take. When I was first diagnosed I was very anxious to have answers about what the future might hold for me. However my rheumy at the time (who was great) was clear that it would take maybe two years before she had a reliable feel for that. She needed to see how it developed and how I responded to the drugs. Eventually I learnt to relax and take it a step at a time.
im not on any drugs for my o a as i have bad ibs and they effect it and im either sick fizzy or conw out in a rash the same as antibiotics x im disheartened with my dr so fed up x feet ankles and k ees giving waynghow am supposed to walk or exercise when the keep giving way x
Hi Radiogirl - sorry that you are struggling to get a clearer insight into what is happening to your body.
I do agree very much with Cindy and Helix. However I will add that I was often advised to be more reconciled and ask less questions on here when diagnosed with RA six years ago. I tried and tried, lost lots of weight, looked at my diet, made myself exercise and tried to convince myself that RA and OA were my diseases.
But in my case it turned out not to be RA and my misgivings and research paid off eventually when it transpired that Sjögren's was actually my main disease.
The lifestyle things still apply of course,and I have plenty of OA and some inflammatory arthritis too I think. And I still query whether the severe arthritis in my lumbar region and neck is all wear and tear- or perhaps has an inflammatory dimension to it - judging by my fluctuating bloods. Same goes for my IBS-c which my new rheum describes as dysmotility - a neurogenic Sjögren's related thing she says. Treatments are broadly the same but it really helps to know so that I have been able to request dietician input now and also saw an ENT yesterday for clarification on tinitius and nose bleeds and sore throat (all Sjögren's related). I have also started a much stronger laxative with help of my GP who explained that neurogenic bowel issues require harder hitting therapies and a low Fodmap diet. Also I'm on a DMARD which isn't used for RA now.
So I think, if you have a naturally enquiring mind too then you will need as much time as it takes to be able to visualise what is happening to you under your skin.
There's no harm doing online research using reputable sites and speaking to your rheum about how you feel and your need for more info to help you be proactive in self managing this disease. It's part of the reconciliation process and I have found it much better to go with my obsessive need for answers than to try and resist! After all, if we were diagnosed with cancer we would have plenty of actual centres we could walk into for support and guidance. With rheumatic/ autoimmune diseases this support and guidance isn't really there in physical form so we just have to search it out.
thanks .im still waitibg for my mri.reoirt from march my dr cant seam to gibd out about it iv phoned and pgoned i want to know who my spec is but ecen my dr font no so my chiropractor says they are pushing me aside i feel dreadful i cant take antibiotics as im alergic to all of them.my dr says iv tried them all and theres noghing i can have x xx
I agree with you diagnosis seropositive RA in January 2016. Told I would follow early inflammatory pathway for the next year with regular reviews. Went smoothly at first then appointments cancelled at least 4 times and on the last one I called the service and complained and given an earlier appointment by 2 months with a telephone review 2 months late which was useless. Saw consultant again 14 months later should have been reviewed by them at least twice throughout the year. They didn't know what to do with me. DAS score which measures disease activity 4.5 so suggested a research they were undertaking but was not able to give me any information.
I'm currently on the intensive arm of this study approximately half way through. Apart from changing my medication around due to their side effects I am no further forward than six months ago.
I have had several blood tests over the time and for 8 months every fortnight which was getting me down as I had no feed back.
Well that's my vent over
Hope you all have good day hopefully as pain free as it can be.
hi radio girl iv had ostio arthritus in my knees had them cleaned 3 times promised a total knee replacement on right knee have ankles that keep giving way pantar in both heels and feet scolliosis in my bk and neck doagnosed ostio in my painful hands and wrists im allergic to most psin tabs i seem to be pushed to one dr after anothet same xrays and told same i have had dyspagia si ce march im still not eating oropetly as i choke no one cares i cant take sntibiotics my dr says iv git allergic reactions to them alk i now have a sore throat i have a tjriat soray my ankles knees hips bk hurt all the time in pain .i take oxycodine for paun tjeres no tablet or csosul as i cant swollow them im 63 i see a private chiropractor and have my bk done and massage had accupunture nothing helps my dr dont like me phoning im on a low antidepressant and diazipan low dose evety day i cant exercise hardly as my joints gi e way. my friend goes to london hosp.tjey havebhelped her no end i adk to be refered there im told no .its not right x wish you well iv not long got up as i felt so rotten ladt night.im told if i need anyibiotics i need to go hosp im not sitting up thete 4 hrs when im not feeling well z
Yes. They seems to have so banyan patients and not enough time. He always says to ring him any time and extra clinics have been added but can you get in. NO.
It seems good to get a diagnosis but you need explaining things.I am same.they just don't tell you enough or mutter
I always want to understand the rationale behind treatment and understand/accept any possible risks. I've now got a referral to a different hospital (going for 1st appmt tomorrow!) because I found my local clinic sadly lacking on the discussion front. They gave out drugs and did tests and for that I'm grateful, but I need to be able to ask questions and have some understanding of ins and outs of the treatment plan, plus be able to discuss (albeit briefly) other things I can do to help myself (eg exercise). I'm careful not to waste professionals' time so I always go armed with a short list of my key concerns. I hope you get things sorted and I understand your concerns.
It seems that you are very much a postcode lottery. I find it very hard to deal with when the appointment times take so long just to get an appointment that I have asked to be seen out of area. My GP has agreed to this after all it is called Choose and Book.
Secondly write down your questions. I got told once that I would need a second appointment to deal with them all. So I gave a copy of them to the Dr and it was surprising the speed we went through it and I got answers to every question.
Thirdly ask for a plan of action so you both know what is going to happen and makeep sure you have a copy.
Fourthly. Are there other team members such as nurse, physio, occupational therapist, psychologist who you can access? Do they have meetings you can attend? are there support groups locally? This would d appear to be fantastic if hospitals got their act together and involved other professionals as it takes the all seemingly time consuming work and when you have others you can tap into then treatments etc dealt with within a multidisciplinary format and you get the best of everything. Having to wait months to be seen by physio or OT or Nurse coukd be leasier time consuming. Would love it for teams like this to be set up especially when it is pain and there are many ways to treat it. I've even heard of one place not only offering acupuncture and physio but massage and tai-chi to!
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I new so please excuse my first vent, my ra is getting to me.
Feel like I have completely failed now and am so low
So many drugs and so little change...
I need to know
Wish i didnt' feel so tired why do people not undertand I can't do what I always want to?
