Hi everyone I hope your all ok and keeping as well as you possibly can. Have just had my first physio therapy appointment with the physio therapist who was young enough to be my grand child. 😂. He felt I was concentrating on the negative symptoms and he said I was focusing on the negatives. I replied not at all I was just wanting to give you all the information. He then asked me if I was using mindfulness to help deal with the chronic back and shoulder pain. 😂. The best comment I laughed at the most was what can you do please don’t tell me what you can’t do. I thought to myself I thought that was the whole point trying to explain why I can’t do stuff and hopefully getting him to understand how it effects me but he basically only wanted to know what I could do and that was it. I just smiled sweetly or as my friend calls it the smile and nod technique where you have to defer to them 😂. After examining me he said yes it’s quite bad but we can maybe help you if you stick to what we have advised which is a hot water bottle on my back a dozen times a day well I thought I have heard it all after praising the guy saying yes that sounds great I will soon be up and about and I won’t be needing many sessions as he can clearly get me well I left the surgery. I had attended as I needed professional advice on safety when using the stairs after falling down them due to vertigo he basically told me after a week of doing one step two step three steps I would be well I said I just needed to be more active we’ll ok so when the M.E (chronic fatigue), fibromyalgia, lupus or vertigo didn’t get in the well I was basically cured luckily I saw the funny side but can’t help wonder why we are made to ignore our symptoms and have to practice mindfulness perhaps it will make their job easier if we are deluded enough to think not facing or acknowledging what is wrong with in the first place is a way forward. What is everyone’s advice for when I go back for session 2 do I only focus on the positive and delude myself into thinking positive thoughts are the cure 😂. Thank you everyone xx
Why I didn’t find my physio therapy sessions at a... - LUPUS UK
Why I didn’t find my physio therapy sessions at all helpful and has anyone else had a similar issue.
It sounds like you have a very inexperienced physio.🤦♀️ I’m so sorry to hear that. To be honest I haven’t found physio appointments very helpful either. For one thing it often takes literally months before I can get one. Last time I had hip bursitis in both hips (I’m sure the result of my Lupus) which stopped me sleeping and hindered my activity, I went on-line and found some very helpful exercises to do via an American site. There were demonstrations by both physios and doctors and I selected what I thought would be most helpful to me. I did them religiously twice per day and was feeling much better long before I was even offered an appointment with a physio-therapist, which I needed up refusing.
So all I can suggest is try Dr Google as well as your physiotherapist. Perhaps you’ll be able to teach him something!😂😂 Joking aside it might be worth asking for another therapist to see if you get on any better with them. 🤞 Good luck.🤗
Thank you so much for your reply. Am so sorry that it’s not easier for you too with the physio therapists. No wonder people totally give up. I just love dr google as he or she is more helpful with no judgement at all. 😂. I hope your having a great day I really do. xx. J😀
Sorry I couldn’t be of more help Jeromicus, but I really hope you get the help you clearly need in making your way up the stairs more safely with your conditions. 🤞 Yes, Dr Google is a godsend with a perfect bedside manner. 😂 All the very best to you and I hope you get good advice and help soon 🙏🏻🤞
Thank you and at least you understand what I am Going through. 🤣
Hey Spotty-ewe, great advice, I just want to add that one needs to follow the exercise in question exactly as shown. I was doing a google stretch suggested for lower back with a knee stretch and popped my knee requiring surgery almost 2 years later because no one thought I really damaged it that bad. So just because you can stretch the area farther, don’t. On another note dry needling did give me some relief when stretching wasn’t working. Good luck.
Very good point you’ve made Rosanna. I hope your knee is fully recovered now. Merry Christmas!
Thanks Spotty-ewe, I stopped prednisone right after surgery and all went pretty good. Although I started to get a slight flare. Almost 2 mouths later I hand tendon surgery on right hand and the casts friction I think gave me soooo much pain feels like 3rd degree burn and the skin is so hyper-sensitive I can’t sleep or focus. It will take time for skin to repair (surgery has healed). Skin is rebelling and so new physio is more hands on so the bending begins, then a new flare started at that time and now whole body is starting to ache and I realized it has to be my lupus. It has been so long since any real pain from lupus, so not sure how to proceed and saw specialists a few weeks back when all was well. My gp is booked solid and my history is too crazy to want to see a walk in Dr. One day at a time I guess. Have a great holiday season.
So sorry to hear that Roanna. Everybody is different with different allergies and sensitivities so I wouldn’t like to make any suggestions in case it doesn’t suit you. 🤷♀️ I’m sure you’ve already tried Aloe Vera gel which is usually very soothing and bicarbonate of soda in bath water is also soothing. Otherwise I can only offer my sympathy and support and I hope and pray you get some relief from the pain very soon. 🙏🏻🤞
Hoping you manage to enjoy the Festive Season.🥳 Very best wishes, Spotty 🤗😘
Thank you and Happy holidays to yours also.
Jeromicus, very frustrating! He sounds like a millennial. 👶🏻 Maybe, next time ask him if he’s using a Jedi mind trick on you? Kidding aside, how possible is it for you to switch therapists? He doesn’t sound like someone living in the real world. A world that an understanding of pain is needed. Best of luck. You are a patient woman!
Hi and thank you for your supportive reply. Good god I just wish I could snap my fingers and sack them all and replace them with competent medically trained professionals that actually care. What a day. 😂😇😂. I hope it all gets sorted out In The end. Think after the next session I will call it quits and it’s basically back to the drawing board. I think Dr Google is the answer 😂. Have a great day. Cheers. J.
You too Jeromicus! All my best, and Merry Christmas 🎄
Thank you and a merry Christmas to you and everyone too. ⭐️
😊
I had a physio tell me I had no muscle tone in my legs 😂🤣. I’m in my 40s and walk everywhere but have RA. Hydro therapy on the other hand was very helpful. There are a lot of exercises on the nhs website that can be done at home including for those with health conditions and mobility problems x
Thank you as I forgot about the NHS website so I can research their site and I will ask him at the next session if he could recommend me for hydrotherapy. It’s great your able to walk and get the exercise as it really goes help. I hope it’s been a great week for you and thank you for your reply. At least on this site I know people actually understand. 😇
I had a very good (millennial) Physio who began the first session by observing my movements very carefully, watched me walk up and down the corridor, then gave me graded exercises, drawing them in pin man ways as well as the printed handouts. This went on a few weeks, until the six week ration ran out. Then she nodded, winked, asked if I’d like hydrotherapy, and arranged it, which she strictly speaking didn’t have the authority to do. Her millennial colleagues nodded, winked, and I got that.
I’m still hopeless though 😉
Hi sorry to hear they only gave you six sessions. They don’t seem to understand that we need more support not less. 😂. I must admit the hydrotherapy is pretty good so I could ask for that. Thanks so much for your support and your reply. Will try and find out if I can get the hydrotherapy and maybe the pain clinic. Have a grade day. 😄. J
Have a good day, too! If you can get hydrotherapy, please do.
Hi Jeromicus, like you I had a young and very enthusiastic physio. The simple stretches she gave me to start with were okay but did not really help my existing chronic pain at all. Then she got over excited and gave me a new programme involving squats which I did for three days. My existing chronic leg pain was then added to by extra excruciating knee pain, which then plagued me night and day for three months until I made it to a brilliant acupuncturist. I never went near her again. Subsequently, a very experienced physio told me that she should never have given me squats to do. I told my rheumatologist who referred me to her that the danger of pain was too great and I would not be going back. With my very best regards, Lily
Hi lily thanks for the reply and apologies for the delay in replying. What a dreadful experience for you. Only the super fit do the squats and when we have the illnesses we have we obviously are not at that fitness level. Good god what were they thinking. If you was super fit you wouldn’t be at the physio therapist. I really hope your future appointments with any other health care professionals is better suited to you individually. I think the problem is they don’t match up the exercises to the patients capabilities. At least you got to see someone experienced to help you. Let’s hope I stumble across one that knows what they are doing. 🤣. Have a lovely Christmas and new year and I hope your ok and keeping well. Cheers. J😀
Hi - I'm a fan of positive thinking but putting it into practice isn't always easy.
I attended a pain management class in july this year. One of the things taught was dealing with pain positively, and not focusing on it which is what I've been doing since it all flared up. Managing pain barriers in the brain, something I knew nothing about and retraining the way we deal with pain. It was enlightening for me. Run by 2 women, one a physio, the other a nurse who both suffered with pain problems. It was a very positive experience for me, lasted 6 weeks...referral from rheumatology.
Do you have a hand rail for the stairs or even sit down and go down on your bottom? I've fallen down mine.....once because I wasnt properly awake, another time I missed my footing. Shook me up but no serious damage. I stay in bed now till I'm fully awake and focus on what I'm doing....
Seen a few physios over the years always looking for a quick fix - there isnt one - hoping it will all go away. Water therapy worked best for me, aqua classes and gentle exercises at a gym...another referral.
Went to just one aqua class with my daughter and felt so much better afterwards. She went home and I havent been back since, my confidence isnt there to go alone. Had one or two sessions from referral and that was ok. Then I was unwell so missed one, snow landed and missed another, they came to a swift end and I didnt rebook anything in the time slot available to do that. At the moment its a 10 min walk with my son when the weather allows.
Hi thank you for your reply and apologies for the late reply. what an experience for you I can’t believe that your removed from the list even when you ring in and explain why you can’t attend. It takes forever to get the Referal so I can imagine you were very frustrated. I have a hand rail I think I was just too tired and the dizzy ness was not a good combination. 🤣. I too find water helps that and a steam room. When I feel better and the vertigo calms down I am off back to steam rooms and swimming. I do meditation on a regular basis which helps my anxiety which helps after visits to any dr or health care professionals as they seem to stress me out. 😂. Never mind i just have to take one day at a time and fingers crossed I will eventually get the help I need. Have a lovely Christmas and new year and I hope you are ok and keeping well. Cheers. J😀
One day at a time indeed!! Wishing you the best, happy xmas xxx
So many people don't understand lupus or fibro. It is very insulting when people say you need to workout or try water therapy and go to rehab. All these things do is cause more pain. Lupus hurts. It hurts badly, and reverse psychology is a very ignorant way to make someone feel they really aren't feeling any pain. Sorry for the rant, but it just annoys me how people think we're lying about how we feel and what we're going through.
Hi thank you for your reply and apologies for the delay in getting back to you. Yes I totally agree one hundred percent with you. You could just imagine that he thinks I am yet another neurotic patient who is complaining and being negative but with just a magic wand from him with his words of wisdom and that all I need to do is to listen to his positive clap trap and I am cured. Grrrrrr. why don’t they just get over them selves. If he has what I had or others have he wouldn’t last the week. Why can’t we explain how it makes us feel. I could barely walk and when he pressed on my back I screamed and he said oh yes he said your backs quite bad. No s...t Sherlock. 🤣. It’s ok for them to say we are in pain but we can’t. I have tried being positive till I am blue in the face but still the pain is there it doesn’t just go. I have a very high pain threshold and I like to think I don’t complain but surely I will need to explain to a therapist all the information. Does he really think If I said I am well there’s no pain and I am ok that he would treat me. He would say to me why are you here there’s nothing wrong to you. It’s very a very messed up logic that’s for sure. Double Grrrr. Have a great Christmas and new year. Hope your ok and keeping well. Cheers. J😀
We do the smile and nod technique. My son got in trouble when I noticed he was doing it to me. Lol!😳🤣
Hi sorry for late reply. That make me smile. 🤣😂🤣. How your ok and keeping well. Cheers. J😀
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