RA, Fybro, Diverticulitis and Sicca

Hi all,

I have just returned from an appt with the rheumatology podiatrist as I have been to a couple of appts over the last year for orthotic insoles. I am still digesting her words and would like opinions from others in similar situations. I struggle on a daily basis due to the above conditions. My RA is controlled to an extent by biologics and while my rheumatologist thinks most of my pain is attributed more to fybromyalgia, he acknowledges there is still underlying inflammation and when I’m scanned this is evident. I am not convinced it is solely down to fibromyalgia as the pain is actually in my joints and not surrounding areas? Also my blood crp/esr levels are within the normal ranges since biologics even when I feel terrible but can come up with really high levels when I’m actually feeling better and not flaring.

The podiatrist has minimised everything, she told me my ra is only low grade 1 inflammation so pretty irrelevant. (I have been on biological drugs for the last 7 years and am on gabapentin and cocodamol) I don’t take these drugs because I’m bored! I informed her I had pretty constant metatarsal pain, which an independent specialist attributed to my RA, she said she could see no inflammation today and that my problems were all my fibromyalgia. She said the only way I can get better is to self help and that I should go on the 5 and 2 diet, foot exercises and do Pilates! If I do this then I will be tired from the exercise, will consequently sleep all night then everything will be wonderful! And In time I may even be able to run a few miles??? She said Stomach fat puts added pressure on the joints etc which is causing the oedema in my ankles and pain, so only I can change it??? She said most people think they can take a pill and make it all better. I informed her that was garbage, I only take the drugs I need to manage and constantly try to make myself as well as I can be. Who would really opt to stay in a situation of Ill Health through choice! I’m a size14, although I could do with losing some weight I’m not obese, if I didn’t have difficulties I wouldn’t be attending these appointments. I do the exercises set by my physio, swim as much as I can 2x weekly, eat a gluten free and dairy free diet, practice mindfulness and visualisation techniques daily & participate in good sleep hygiene. I’m stunned that a health professional adopts this attitude, I’m doing my best to function to the best of my ability. I hate this illness, it’s no wonder people make out they’re not as bad as they actually are, especially when you have “professionals” who basically bring you in for an appointment so they can tell you to get on with it! I wish there was some way they could experience what it actually feels like to live with these illnesses 🙈

[SoulmanPaul]

Hi Leyla

Oh goodness what a terrible experience! It's bad enough that the general public/friends/family have little or no understanding of RD etc but for a professional to be so blunt and seemingly devoid of empathy....well I'm staggered! Speaking as an ex NHS nurse (thanks to RA) I'd be contacting PALS if I was you.

Take care

Paul

[Hidden in reply to SoulmanPaul]

Thanks Paul, I actually couldn’t believe what I was hearing from her. I thought OMG this NHS region needs some serious training input! I totally get the holistic approach to maintaining the healthiest lifestyle you can possibly achieve but there was absolutely no acknowledgement of any of my conditions & their impact on my quality of life. She basically said your drugs are working fine for your RA, so sling your hook, lose some weight and get some exercise then you’ll walk fine and the fibromyalgia will be gone. 😂 I wonder what my consultant will think of her approach.

You take care too 🙂

[hatshepsut]

Sounds as if a detailed complaint should be winging its way to her superiors. It would be interesting to find out when she became a rheumatologist!!!

Seriously, I am so sorry that you had to endure such unprofessional ignorant remarks. I do think it would be worth taking it further, if you have the energy, because I dread to think what damage she is doing to the vulnerable people she is supposed to be treating. Take care, M xx

[Hidden]

Thank you M, yes I think I will contact them to raise awareness of the situation, the comments from her are not good at all.

You take care too xx

[oldtimer]

This brought back memories of an unfortunate and similar appointment I had with one particular podiatrist who gave me a lecture on 'the dangers of wearing high heels'!!!! As if I could! She, too, made me feel that my problems were self-inflicted and could be solved if only I had enough self-control.

I'm really sorry that this particular person had no knowledge of the effects of Rheumatoid Disease or why you would have been put on these powerful (and very expensive!) medications without due cause.

I suggest that you do what I did, and write a formal letter of complaint explaining that you believe that this person has had insufficient training in the management of musculo-skeletal conditions, and does not know enough about Rheumatoid Disease to be safe in her role. This is the only way that someone like that is going to get the re-education that they need.

After that, I saw another podiatrist who was extremely helpful.

[Hidden in reply to oldtimer]

Yes it’s not productive at all when you go for a review and she hits you with nonsense like this. Although it makes a huge improvement to my RA, humira comes with its own issues/side effects, alongside my other conditions, she was oblivious to this and as you say not safe in her role.

Thank you all for your responses, it’s good to have access to a site where you can discuss things with people who have a real understanding of the impacts of these illnesses, so much appreciated. I left the hospital yesterday thinking what planet is this woman on? And questioning my own sanity 😱

Hope you all have a positive day 🤗x

[Hidden]

???? Okay, well that doc pretty much sucks. No offense. I have known people in my life (my adoptive grandmother was one of them) that liked to be sick because of the attention they receive. But most normal people just want to live their lives.

Weight can cause a lot of things, but it is not the primary issue behind any of those conditions according to the research I have seen. It MIGHT help the RA, but I'm not sure it will help the Fibro that much. Many of the people with Fibro are perfectly "normal" weight (and a size 14 is certainly not obese..).

Yeah - I have wished that I could gift these diseases to others as well. I wish for you to find a more empathetic doctor soon

[Hidden in reply to Hidden]

Thanks Caeryl, yes I’m 5ft 7 and a uk sz14, so could do with losing a bit of weight but it’s not so easy when your having to take steroids either lol. Have a good day. 🙂

[Hidden in reply to Hidden]

Agreed - When I developed asthma, it was so severe that I was in the ED every two weeks and in the hospital at least one week every other month. It was stress related, and no matter what I took it would not resolve. I was cycling on Prednisone for more than two years - you know - 3-60s, then 3-50s, then 3-40s, etc. Every single time I got down to 10 mg a day, BOOM! E/R. Once I left the job no more E/R, no more hospitalization. I DID however in that two years gain 70 pounds and I have not been able to lose all of it.. Sheesh

[Witness2]

I dream of a world in which health technology allows health professionals to physically and emotionally experience the illnesses they treat! How outrageous! Please send off that complaint so she can't upset any one else. She may not be unkind so much as poorly trained. Actually, ignore that - there's no excuse!

[Hidden in reply to Witness2]

Lol.. thanks witness 2, yes it would be good if some prototype full body suit could be created to simulate what it actually feels like to have these diseases. Then it could become mandatory as part of the training process in RA related medicine. They could wear the suit for a few full days( & nights) stiff, pain, spasms , fiery aches, immobile the list goes on ... then we can say get yourself to the leisure centre in the suit and get your Pilates done, you’ll be fine 😂😂

[Chris771955]

I couldn't have put if better myself, that's exactly the way I feel, after nearly two years of being pushed from pillar to post by professionals, and then told 'Ah well youve got ra, go away, take the drugs, and get on with it' . I find it hard to understand how they can be so uncaring. I know they see a lot of people all with their different moans and groans, but like you say, we didn't ask for this horrid disease. I get the feeling they just don't like patients, so why work in the caring profession then?