Looplylady

Hi Just joined this community hope we can all help each other.With reference to your hospital visit it sounds a nightmare & left you with more questions than answers, some doctors show little care to their patients.

With ref to raynaud's I suffer badly & find nothing works.....I do find wearing half fingered gloves can help.

Pumpkin2009 in reply to Looplylady

Can you share how your hands react? I appreciate your reply so much.I am very glad you have joined. This is a really great group.

Healing hugs.

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Looplylady in reply to Looplylady

Yes no problem. My fingers, toes, nose & knees are either purple & mottled or white, when white they are very painful. No matter if I am aboard & very hot.....still cold & purple, have to wear socks in bed all year.

Sorry about delay having a bad day today.

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LottieLou96

Heya Pumpkin,

You've had a tough time with this appt. I can relate, it's been probably 9yrs since someone bothered to actually do an examination. Confuses me no end, as as an ED PA I do histories and thorough examinations all day. The most someone does as you say is look at your hands, in that brief moment.

I can only speak of my own experience. Twice I have had calcium channel blockers (nifedipine or Amlodipine), which work well for many people, but in my uniqueness, or what people say is me being opposite, it makes me worse and I end up with coronary artery spasms and pulmonary hypertension.

For me and my hands, which have as you know had a bumpy ride... What seems to help is gloves, socks, blankets, hot water bottles. Take them on and off as required. You need to attempt, easier said then done, to relax, to calm oneself down, even as weird as it sounds think warm thoughts'. If you need a whole body reset, a warm bath or warm shower can help get everything the same temp, just don't burn yourself.

I have to avoid most things, high intensity exercise, well anything other than walking, cold, wet(is usually worse), changes in weather, stress, etc. And even a little bit of raynaud's can be uncomfortable, but is a very common condition on the whole. Slow reheating, and the idea with raynaud's is yes they can feel cool, but don't let them get cold. The reperfusion injuries down the line aren't helpful. I air on the side of too warm, wrapped up, and never to be cold again.

If mine are terrible, I slap sudacrem over them and wrap my whole hands in bandages for a few days and voila !

I'm so sorry they didn't really seem to care. I don't know why or how it's like that. When I'm in with a patient all I can do is feel so passionately for them, and want to make all of their problems go away. I too, can't seem to find any luck with them. But your definitely not alone, but I wouldn't wish it on anyone.

Bless you Pumpkin

❤️☺️❤️‍🩹

Lottie

KayHimm

I’m confused, Pumpkin, how did he determine it was time to discontinue your methotrexate and decrease your steroids if he didn’t know how you felt? Was this based on lab work?

Certainly sounds like his advice on the Raynaud’s was good. The cardiologist will know what to do based on his recommendation.

It is a mystery to me when they do what in terms of an exam. If you had been looking really sick, had a fever and complaining of certain pains he would have done a thorough exam, I bet. I guess they know what they are looking for.

It sounds like you don’t have a good rapport with this doctor. Not asking how the patient is seems like poor communication skills to me. Maybe you should find a rheumatologist you like better.

I am sorry this visit was so unsatisfactory. Glad you got your Raynaud’s confirmed, though.

xx K

Pumpkin2009 in reply to KayHimm

Hi! When i said that I thought the leflounimide was helping with the pain somewhat, then he decided to double it and change everything but the plaquenil which I would never agree too. When I was taken off plaquenil years ago due to hearing loss, everything went haywire. I had not blood work prior and he did not order any either. Everyone's support to seek another doctor is making me trust myself and reach out to a new one. I have been seeing him for almost 2 years and I have not felt good about it all this time. Although he did say to talk to the cardiologist, he did not totally say it was Raynaud's, but to see if it happens again. I thought a rheumatologist would address Raynaud's. My cardiologist only addresses heart issues, not even blood pressure so this will probably be interesting as well. I have been on Norvasc for blood pressure for 20 years. I also take Enalapril for blood pressure which I think is supposed to help with Raynaud's as well. Every specialist seems to just want to do what they want. It is frustrating. Again, I so appreciate your knowledge and wonderful support.

Healing hugs.

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Maddymay65

Dear Pumpkin2009I agree with KayHimm, sorry you had such a poor appointment and I agree maybe a change of appointment. I have just changed Rhemy after 3.5 years and the relief 😮‍💨

I did go through my Gp who advocated on my behalf and wrote a letter to say that she thought it would be better if I saw someone else . I also rang my connective tissues nurse and spoke in confidence to her , she was very supportive and of course most importantly I had the support of this amazing group ♥️, thank you ,

Good luck M x

PositiveT

Hi. May today be a less painful day for you.I agree with all the comments beforehand. Loopylady sounds like she suffers with Raynaurds similar to me. My hands go a beautiful 😏 purple colour. I get the tell tale colour change line just below my first knuckles. So my hand is kinda pinkish and above all my fingers are whiter than white. Unless in temperatures below 15 degrees when my fingers are blue. To combat this my rheumy prescribes me Sildenafil (viagra !) I find it does help a little. I take three tablets a day. I hope you have a little chuckle over the viagra 😂 I did when he prescribed it to me - I thought he was joking at first! I wear Turtle Doves fingerless gloves all day. I am slowy getting a variety of colours to match my clothes. They are a little pricey but really help. I have been asking for them for birthday/Xmas presents. I invested in a pair of rechargeable battery heated glove liners available on Amazon. A very expensive outlay £110.00 but worth every penny. I wear them under normal gloves to a) keep the heat in and b) to keep them clean. I can't go out without these unless I know the temperature is guaranteed to be above 15 degrees for the period I am out. As soon as I return I plug them back in to recharge. They enable me to go for my daily walk and they are my best friend for my hands. I feel for anyone who suffers with Raynaurds as it is painful and a hindrance but the gloves have been a positive way of dealing with it.

I am sorry you do not seem to have a very good experience with your consultant. You could write him an email (which I have done in the past) expressing how you felt. I found this very productive as the next time I saw him we went through the points and he immediately apologised. We now have a very good rapport with each other. The other approach is to ask for a new rheumy. Don't be afraid to explain why we are all different and sometimes just don't hit it off with people.

Sending you a virtual hug. 🌻

Ncut in reply to PositiveT

Hi I’ve just read your reply to Pumpkin and was intrigued to see that you have been prescribed Slidenafil. I have been prescribed this for my Raynauds, however when I read the leaflet and it said not to be taken by women I panicked. Result I haven’t taken any yet as I didn’t feel reassured from the information given. Could I ask if you have had any problems with it and has it relived any of the symptoms.

Kind regard

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PositiveT in reply to Ncut

Hi Ncut. Yes I too read that on the information leaflet. I rang my rheumy and questioned it. He reassured me that they have to put that on the leaflet but it is completely safe for me to use. He said it is so that females don't think it will help them with their libido!😂I have been taking it for a year. It does help. My Raynaurds is severe so it doesn't make it go away. As far as I am aware it has not given me any side effects. Hope this helps. 🤞🌻

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Ncut in reply to PositiveT

Thanks for that reassurance I did ring my rheumy but they didn’t get back to me. Thanks so much.

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PositiveT in reply to Ncut

Glad to have been assistance. 🌻

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Pumpkin2009 in reply to PositiveT

Thank you so much for such a great response. I am definitely considering making a change. I have been seeing him for almost 2 years and it has always been like this. I hate change, but I can try someone new and see what I think. I just have to take the plunge. Thank you again. Hope you have a really nice day.

Healing hugs.

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PositiveT in reply to Pumpkin2009

You are very welcome. I agree change can be hard. Sounds like you have a plan to get better help. Wishing you good luck and a virtual strength hug too.Thank you for the kind wishes. Relax and enjoy your evening. 🌻

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lowraind

I asked for a change of nephrologist after my 2nd visit, when all he did was shift papers. Just had a mix-up with my podiatrist appointment--he was not there and I had to see someone else. I have been thinking about changing because of his lackadaisical manner. When this new podiatrist, at 1st visit, commented on my swelling in ankles and other comments on appearance, I asked the person setting appointments how I could switch. She just scheduled me with the new doctor.

Pumpkin2009

Thank you for your support. You have encouraged me to seek a new doctor. Have a great day!

Healing hugs.

StriatedCaracara

I'm using Family and Friends Test to give feedback on some appointments.

I google 'Name of Hospital Trust' 'Family and Friends Test'

After typing what I wanted to say and saving it so I have a copy - I copy it to the questionnaire.

It took me about a month to feel like doing this. They don't need to be written straight away.

Take care. Hope things get resolved and you get much better care soon xx

Pumpkin2009 in reply to StriatedCaracara

Thank you so much for your response and information. Hope you are having a nice weekend.

Healing hugs.

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Tanitani

Seems ok to me. There is not much you can do for Reynauds. If i was you i wouldn't take meds for it if it is not too severe because meds for it could have worse side effects. During the winter i take nifedipine topical cream if i go outside, and even topical cream if i put a bit too much created a horrible headache, but still better than systemic meds. Immunosuppressants don't effect Raynauds at all.

stiff19

HI PUMPKINI suffer this all over my fingers and they turn white, also sadly I have had little care though I no longer go to docs because of it.My hands also swell a lot and I got to show show a dermy pics of it last year after gp see it and referred me to rheumy originally and she said its probably my rings 😡 (I only wear my past mums wedding ring and one other) I said its not the rings the gp see this and referred me on it. I no longer wear ring all the time but still happens along with prunes wrinkly fingers which coincides with other symptoms and im always hydrated .My chin knees and feet are always changing colour. All I was told was maybe raynauds and well I was referred to another hospital as they don't know here why all my host of symptoms but that was in height of pandemic and I still haven't heard anything and ive lost count of how many years since all symptoms started. I was also told ive got to expect skin changes with ageing 🤪Im 52 and I don't think raynauds symptoms are part of natural ageing process.

Your hospital visit sounds like many of mine.I was told by one doc "I hope you find someone interested in helping I can see you're not well" . Hope don't help, so I await an appointment that may never happen, doc told me appointment made but ive nothing from them to say im on waiting list or anything🤷‍♀️ Seems like them saying they think it could be something rare is a fob off. I can't fathom why I not been sent to mctd department or anywhere, never did see a neurologist either , it was another hospital that took my eye problem as serious and made urgent referral which didn't happen was stopped by the dermy at the same hospital I see the rheumy who I believe has caused this.

I don't think you expect too much at all, I think we just expect common courtesy and a bit of understanding when indeed symptoms are seen. I too was left and still am unsatisfied, Yes real examinations would be nice and my bad rheumy experiences have all come from a doc writing he examined my hands and did a test when he in reality didn't move from his desk or come near me. Amazing!!

I am sad to hear this is all ongoing little help or interest but if I was you I would definitely consider the rheumy or another route , you deserve better, we all do. 🤗

Can I ask do your fingers spread ok?i cannot spread my fingers or flex my ankles the majority of the time, and sometimes my fingers will drift in one direction and trying to hold my hands still a couple of fingers just do twitch and move on my right hand, funny as my eye drop is the right side too 🤷‍♀️ Hope you don't mind me asking

Pumpkin2009

Thank you for your response. First, let me say that you are not that old so I do not believe what you are experiencing has anything to do with age. I I can spread my fingers, but my fingers are deformed and scary looking from arthritis so they have their own issues. They do swell from lupus and I do not wear rings. My knuckles make it impossible. I was prescribed a ring for hyperextension on one finger, and I wear it when I am able, but swelling makes it difficult at times. My ankles are somewhat stiff, but I also have bone issues on my feet. My hands and feet are rather alien-like . I wish I could be of more help.

I appreciate your support and wish we all could get the care as well as compassion we deserve. Wishing you answers soon.

Healing hugs.