Midwife looking for advice

Rhixxx

Hi there,

I've been diagnosed with RA this week (hands, feet, knees, hips and elbows) after suffering with joint and muscular pains (among other issues) for the past year. My medication hasn't improved my pains yet but I hoping they will in the next few weeks. Also seeing the specialist nurse in a few weeks time before I commence another. (Currently on various pain relief, plus hydroxychloroquine which I've been on since December after my initial rheumatology appt. Will be starting sulfasalazine once I've seen the specialist nurse)

I'm 30, married mum of 2, currently working as a midwife but have been signed off sick since September as my work plus the pain/fatigue was unbearable. Plan was to be at work beginning of Feb as financially being off isn't viable! Unfortunately pain stepped up a notch and my return to work took a back seat. I can literally walk for an hour and then the pain takes over, I need to sleep following any activity like housework or shopping. And at the mo I just can't see the light at the end of the tunnel!

I'm remaining positive that my symptoms will improve, but day by day I'm starting to lose my patience, even typing this is painful! Walking, nausea, it's all wearing me out and I'm finding It hard to see how I'll be able to adjust my working life etc my role is demanding, a lot of hands on care with mums and their newborns, blood taking, cannulating, suturing, walking, emergencies etc, endless note writing, computer work. I love my job and Im terrified they will tell me that I can't be accommodated and will have to end my career which I've only really just started!

Does anyone else work in a hospital based, patient focused role? Are there any midwives here in the same situation? How do you cope and achieve a balance between managing RA and work?

Thank you in advance x

barbara12

Hello and a warm welcome form me..only like we always say sorry you had to look for us in the first place.
Sorry I cant offer any advice I have OA , but I do know we have a few people in the nursing industry..its pretty quiet at the weekends but hopefully they will see your post and be able to offer some advice x

Barbieg

I'm not in the nursing profession but can help reassure you about the future. I was diagnosed with RA 10yrs ago, and really thought I was going to be in a wheelchair I was so bad. Glad to say I was put on Sulfasalazine and etodolac and they worked, although the Sulfasalazine takes some time to dampen the RA down, it worked for me. What I am trying to say is there is light at the end of the tunnel, try not to despair as things will get better. I'm sure someone in the nursing profession will be able to reassure you too. Barbara.

trepolpen

hi Rhixxx , myself had RA for nearly 20 years , some on here had it a lot longer , are you positive for Rheumatiod Factor

reason I question this is because RA dont normaly affect our hips , well not those that have not had it very long , the treatment for all the arthritis is pretty much the same , myself been on Sulfasalazine since 1996 & maybe they will add another of these drugs at some point like methotrexate

for alot of people they can control RA very well now so try to be positive but it may take some time

mellivenelli

Hi Rhi!

I'm a midwife too! (Direct entry qualified)

I've been off sick since beginning of last year and am in the process of losing my job which is very upsetting.

Been struggling with pain for a long time but only just been diagnosed in january with Seronegative inflammatory arthritis (which the Cons thinks is Psoriatic Arthritis now) and Hypermobility syndrome. Also have Osteoarthritis of the spine and recently had a total left hip replacement.

I totally feel for you! I have just recently started on Hydroxychloroquine too and have had a steroid jab. I think the steroid has helped.

Please feel free to inbox me any time xx

Julie37927

Also really sorry you have to find us!! Don't lose hope, you may still find the right med or combo of meds that work for you so you can live your life. As far as work, that's a little harder to manage. Is there any way you could do part time or perhaps do just the administrative side of your job? A desk job, I mean? Or teach at a midwifery school? I also have OA and a very physical job and am thinking of just that. Good Luck!

dibdab

Hi Rhi,

Just wanted to encourage you that I have a friend whose daughter is a midwife despite having been diagnosed with JIA as a 2 year old. She has a had several joints fused, sometimes needs a walking stick, and has had to find ways to adapt some of the things she does, but she is one determined cookie and has refused to give in.

As far as meds go- you are at an early stage, there are many effective meds out there so don't give up- many of us take 3 or more dmards in combination to get the best effect. For me a recent change to injected methotrexate in combination with hydroxychloroquine and sulfasalazine has much improved my quality of life- more energy, less fatigue and fewer side effects.

Hang in there, it's often not as bad as we originally fear, and we find ways to live with the disease.

Deb x

Rhixxx

You'll have to bear with me, totally new to all this!

.. I've had scans and bloods taken and retaken since January last year, I've also been tested for various issues too including a scary few days where I needed a few MRI's as they thought I had a brain tumour!

From the beginning of last year I had vertigo, nausea, joint/muscular pain issues with my memory and problems with my speech on occasion until end of May/June. Had 9 weeks of a 'break' up until September where the joint/muscular pains decided to return with a vengeance. GP has come up with various explanations to explain it all away but nothing was ever proved (I'm a total stickler for evidence, kinda need to see some hard fact before I agree)

All the while my bloods have come back 'normal' apart from on one occasion late last year where my thyroid function came back as borderline, but all since then there's been nothing set in stone. I've read that some people can have arthritis and still have normal bloods etc, but I'm still not 100% convinced of my diagnosis this week.

After speaking to my supervisor and several colleagues they all stated that I show signs and symptoms of ME, researching into this further, I can relate to every symptom but every dr I've discussed this with have disregarded this possibility since inflammation was found on ultrasounds I had last month.

So totally confused at the moment, I have faith in my dr's and I'm looking forward to seeing the rheumatology nurse soon, hoping they will be able to shed some light so that I can adapt and get on with living etc.

Thank you for putting up with my waffle and your responses, my husband just gives me a smile and a 'what am I supposed to say' look!

barbara12

Hello again Rhixxx
You waffle has much has you like ..I know the look your husband gives you, it must be so wearing for them, that is why we have this forum brilliant to talk to people that understand
You do seem yo have a good GP..all the test are being done..but like you say arthritis is so complex, after having it for 4years I am now in the process of waiting for another appointment to see Rheumy ,the memory thing you mention is very interesting..and the speech, sometimes I feel I am not making sense..nothing new there but..I blamed on my meds now I do wonder.
Good Luck with it all and I hope you get some answers very soon..we all strive to get a name for whatever we have x

dibdab

You keep talking, we keep listening and caring- it's the way it works here . I do feel for our partners because they can never have a real sense of what it's like to live in our bodies- they see a fraction, and it takes them a long time to come to terms with the reality of how it is.

Some forms of arthritis don't show in the bloods- it's called sero negative- that's where a number of us are, and we are diagnosed by symptoms and response to meds. Keep asking questions- it's how we begin to grasp where we're up to and what we face. You might want to chat to the help line team- they have lots of experience and can refer you to information sources that might be of interest to you. If you put a word in the search bar it can also point you to relevant literature.

Deb x

trepolpen

have they done Anti-cyclic Citrullinated Peptide (anti-CCP) Antibodies in RA , and have they tested you for human leukocyte antigen B27 (HLA-B27) gene test & have you ever had problems with psoriasis

the inflammation was found on ultrasounds implies some kind of arthritis but the rest dont sound much like RA & think you need a lot more test , only thing is the treatment for PA ,AS & RA is pretty much the same & maybe ask for a second opinion

Rhixxx

Thank you for all your replies

I haven't been tested for Anti CCP or HLA B27 that I'm aware of. I will be chasing that up! And requesting it once I've had a read up etc.

Since a child I have had eczema (never officially diagnosed by a dermatologist) on and off. Never psoriasis. Oddly enough though, when discussing previous 'flare ups' and the locations it's appeared, my consultant told me that I shouldn't be getting eczema in these areas (elbows and ankles) but didn't provide a reason why I do. (Seem to have a rheumatologist that feels like he has better things to do)

I currently have an patch of eczema on my ankle which he did check over and confirmed it wasn't psoriasis.

Starting to think Im just a little weird haha

stickywicket

Hello and a late welcome from me too. It does all sound horribly confusing. I hope things start to get sorted out soon.

Cariad71

Hi Rhi,

Sorry to hear you're suffering but this forum is very supportive. I know the husband look you're on about! It's not that they don't care it's just I think they don't always know what to say. hopefully once your diagnosis is clearer you and your husband can start to understand it better. I brought some arthritis uk leaflets home last week from my rheum appt for my husband to read, they're very well written and people hear all sorts of myths about arthritis (my husband has heard that drinking your own urine can cure it !). They're all available on the arthritis uk website.

Anyway, your post caught my attention because I'm not a midwife but I do work in a hospital based, patient centred role in the NHS and I understand how arthritis can interfere with your working life. However Im lucky that I'm currently able to do the more office based side of my job and run outpatient clinics which are mostly sitting down. I'm having a few issues with work atm though because this is the longest flare I've had since working in this hospital (6 years) and so its the first test for them of exactly how sympathetic they are with me and how they're going to deal with me! I'm finding it very difficult and stressful, as you know with the pressure on the NHS, no department particularly wants a problem member of staff on their hands who can't do certain things and that seems to be showing!

I'm assuming you've been under occupational health by now? Theyre usually very supportive. Employers have to make 'reasonable adjustments' for employees with disabilities but what I'm not sure of is what constitutes 'reasonable' for a midwife? Are there more clerical duties you can do long term?

I wish you all the best and hope you get a clearer diagnosis soon xx

Boomer13

Hi Rhixx;

I have PsA and the psoriasis I have is an atypical pustular. There are a few different types, as you likely know. Mine was determined only by biopsy. The most persistent rash follows my ankle joint around my foot and up the skin over the tendon on the outside of my calf.

I have some other weird skin symptoms which, when they appear, usually portend a worsening of the arthritis. Mine has not been straightforward in symptoms or in diagnosis, except that bloodwork has been pretty normal throughout.

Maybe a derm consult may confirm skin psoriasis? Just a thought, as skin rash types can overlap in visual appearance.

Good luck, hope you can be diagnosed and receive treatment soon.