WHAT A JOKE

I went to the NHS rheumatologist after waiting a month and imagined NOW I can get to the bottom of this. I told her all about my arthritis in the knees, feet, wrist, how my shoulder hurts at night and the pain travels down the arm. She examined me, told me to get a blood test, and I would receive the results in a few weeks.

The letter came and all it contained was a series of back exercises. Wow, that helped loads. Completely useless. Might as well use my PPP, go in to a consultant and pay £220 for the 15 minute consultation.

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19 Replies

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  • Sookiedee I felt the same way when I went to my rheumatologist last year. I didn't get much out of my Visit either. I guess they really don't know how the hell we feel. I can relate to how you feel. My back has been hurting like you wouldn't believe. But a visit to the rheumatologist turns out to be a joke from what I gathered as well. Unless you find one that's good and really cares how you feel. J. D. Quinn

  • Thanks Jason. You know where I'm coming from! So damn frustrating.

  • Yes I do Sookiedee, I damn near went to my knees when the sharp pain hit me at work, and that's not the first time. I have days I barely can walk it gets so bad. If I make a wrong move it'll hit me too. I have to be very careful anymore. It seems to be more prominent in the lower part of my spine to my feet. There are days that it hurts to even walk. Those day I wish I had something like a chair to get around with on those bad days. Heaven for bids I hope yours doesn't get that bad and hopefully it won't start in mid part of your spine like mine has. My knees hurt like hell tonight right now. Hopefully you'll find something that will work for you. It's hell having to go through the pain everyday. I may look into a physical therapist to get an option or from the or see it they can help me. Take care Sookiedee

  • hi, just wanted to say my appt with a rheumatologist was a joke too. He walked in the room and commented on how rheumatoid arthritis was causing the huge knots on the joints on my fingers and how crooked my fingers were...fast forward a few weeks later after doing bloodwork he said i had no inflammatory processes going on?! I have been bedridden for 5 years now with severe global inflammation...

  • What do these idiots get paid for? (some idiots, don't won't slander on my hands)

    This man was too contradictory for words. Maybe get a referral for someone who has a brain? I truly hope you can find a caring specialist who has the concerns of his patient at heart.

    I am sorry to hear about this, Kmrome, and YOU are in my thoughts.

  • Hi sookiedee

    I felt exactly the same earlier this year went to see rheumatologist thought he would look at my mess and my knees but he oredered X-rays on my hands and feet nothing on knees and hips did blood tests and referred me back to go I had waited 8 months for this appointment and thought he might look at meds and at the swelling in my knees which is osteoarthritis but he just wasn't interested. I left there wishing I had never bothered he mentioned pain clinic and I said but we don't have a proper pain clinic here anymore not one where they try and help you control the pain all it consists of is an OT and a mental health nurse along with a Mindfulness coach and to be honest if I can stitch that helps me more than any of these people I don't sit there thinking of pain all day which is how they make you feel like it's in your head! I did have a letter to say I was vitamin D deficient and was given a prescription for that.

  • Thanks JD and Jackie, I'm sitting here at 02:30 because the pain (I guess from the knees) travels down the legs and prevents me from sleeping. I DO take vitamin D, and joint supplements. Big help...ha. I was reading how in the states chronic pain medication is horribly expensive, and if you have an autoimmune disease - wow- that's pure gold for the pharmaceutical companies. Whatever happened to regulated prices and caring doctors? We live with our bodies, feel the pain and hope to hell for help.

    Sad state of affairs, and totally unjustified. Take care both of you.

  • Hi

    Sorry to hear youre in such pain. Following blood tests some years ago I was diagnosed OA and like you it is in all joints but only on right hand side of body. After months/ years of taking a variety of pain and anti inflammatory & being told at 55 I would need hip replacement did exactly what you were told to do. Now I go to Pilates twice a week, swim, do some stretching and strengthing core work most days. I read up about diet and cut out gluten and alcohol as much as poss and I try to be mindful following 12 week course.

    I know it's difficult changing lifestyle and everyone's different but although I still have pain in foot, shoulder and hands it's manageable and my new ceramic hip is fantastic. No more meds, sleeping most nights and feeling on top of things but it's been a long ten yr process to sort out my body.

    Exercise and diet changes can help in long term. Research is being done re inflammatory arthritis in hopes different treatments can be offered.

    Good luck. I understand how upset and frustrated you must feel.

  • I'm due to have a hip replacement in March it's so encouraging to hear it has worked and you feel good

  • Thanks for the encouraging words, Molhayes. I'm glad your new hip is working well! I AM going to join a gym and also cut out certain foods in the near future. I did have x-rays on the lumbar region and will find out soon about that. XX

  • Hi hymob. i dont have a skype account but interested in what you have on pain reliefs.

  • This sounds terrible! Sorry sookiedee :( we hope you can persevere and try to find a better Doctor who cares.

    Despina

    Arthritis Action Communications Officer

  • Thanks Despina!

  • I also know how you feel only tooo well. I have been seeing a rheumatologist for about 4yrs. I'm lucky If I see her more than 2 times a year. I get to see the "ra nurses" more but they just talk and tell me I should move more etc they do not get how debilitating fibromyalgia is and do not make even a tiny attempt to understand let Alone do some research about what it is I'm suffering from. I've got R.A. depression and anxiety. Fibromyalgia that hasn't given up to a non flare state in 2yrs. Ptsd. To name a few I've been to pain clinic but booted twice as I've cancelled appointments due to being soo bad pain wise that I couldn't move let alone go in a hospital transport patients car to 15miles away.. I haven't tried to be re added to it because I can't guarantee to be able to attend the blooming appointed appointment!!! My rheumatologist has had me on every drug available and my body rejects it through various high/low results making me have to come off them. Then worse I have to have what's called body rest to get back to my normals. This cycle of body "abuse" I'm sure isn't helping at all because each time I have to come off a drug I'm in worse pain and feel even more a failure and a burden which is when I then feel suicidal thoughts on top of everything else. I am adamant because of having 6 grandchildren that I wouldn't commit suicide because they keep me "here".

    But I'm sick of suffering intense pain of being bedridden with high dose pain killers from pregabalin, tramadol, to slow release morphine and liquid morphine yettttttt I'm still in huge pain. I don't get why there's nothing available in regards to relief or even a new study or drug research etc. This disease has Been around for god knows how long, whyyyyyyy isn't there more done to solve it. If its an auto immune disease then why does it seem there's nothing being done to look into the immunology side to rid us all of this gripping debilitating disease. Feeling like you've got flu all the time isnt fun. Worse when you struggle to pick up your baby grandchildren. I feel I'm losing every last bit of me. At the very least I want to be able to cross stitch again without my fingers saying nooooo toooo much pain. Does anyone know of a good glove that actually helps the fingers to not numb up and be Immovable???

    I'm stuck now as next time I see my rheumatologist I expect to be told I've gotta start the drugs all over again or be told there's nothing left to have to try to make a difference.

  • Hi amanda46

    I find my feelings quite similar to yours about fibromyalgia. I think the reason why little or no research is done on the condition is because although it is most unpleasant it will never kill us. it will make our lives our own personal hell but will never finish us off. I take Paracetamol when I have to I don't take any other Anti inflammatory meds, or pain relievers. I have never found anything that worked and the side effects were really quite dangerous for me. I was prescribed Lyrica some time ago and took a massive overdose of quite a considerable amount of meds thankfully my husband was really worried about me and found me before too much damage has been done. I'm not saying I have never wanted the pain to end I have but I would not actively do anything about it. My daughter is my little ray of sunshine and I would not be here but for her she is the reason I get up everyday. She is so supportive and is a wonderful help to me. Its a tough road we all travel and I'm fed up of one thing leading to another. I have a rorator cuff tear in my shoulder from turning around and it will need to be operated on to repair it. I get gout and have had three bouts in about three months. I have stopped having any alcohol its going to be a long Christmas but if its gout free i'm sure i will survive. I had a knee replacement but have fibro all around the area and I have a back injury so I'm in a lot of pain with that constantly. I can walk but when I stand the pain is really bad and if one more person pokes me with their handbag I wont be responsible for my action the pain just shoots up and down my body. I would love when people touch off me for to be able to inflict an electric shock on them so they feel a little of the discomfort I do. Rant over and I feel so much better. Have a good Christmas, gently hugs coming your way.

  • Hi . Oa sufferer here. just a thought have you tried compression gloves for your cross stitching

  • I can really feel for you, Amanda. No one knows our bodies better than ourselves, but when we try to explain it to specialists/nurses, they haven't a clue. Research IS needed for heaven's sake.

    This isn't the Dark Ages. Why can't we get pain relief? Stuck in a rut and trying to smile through is almost impossible. Depression would invariably go hand-in-hand with this acute struggle. You are NEEDED for your grandchildren most certainly and I'm so glad you have them in your life.

    I hope to God you can find some answers - I AM so weary of it all and we deserve better caring treatment from doctors instead of a mouthful of meaningless pills and apathetic diagnosis that sometimes can be the greater evil than the disease itself.

    Sending kind thoughts your way....fight for the right for answers and have them ACT upon your concerns. Take care.

  • Hi there. i suffer with similar symptoms. I have oa in the hips. Had back pain for years. got fobbed off for years. But now i have no faith in doctors , i reckon their advice has made me worse so i'm having to take much better care of myself. i cant do much now so its all about managing the pain. Have they scanned ya hips only thinking if ya symptoms are same as me ?

  • Hi Lisa, Sorry you have OA in the hips. I think that's the only area that I DON'T have arthritis. I've been trying to get back results of my x-ray on the lumbar area which has been a chronic ache.

    I agree with you on taking better care of ourselves on our own in some cases and I get tired of going to specialists who are clueless on certain issues. It's a pain in the royal ass at times especially when you want a good night's sleep.

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