Another Newbie

nicole

Hi all
I have been avidly reading posts going back the last few years, I think that I am on page 192 at the moment and you are all such a wonderful caring and informative bunch of people. I may ramble a bit now so I'm sorry.
I am 46 years young, been suffering with pain on and off for a few years but the last 12 months have been rough so I finally dragged myself off to the doctors to complain about my hands, wrists, hips, neck and feet. Doctor initially thought RA but I do have classic OA hands complete with Heberden nodes, the tip of my index finger has bent in towards my middle finger and there are a few other abnormalities going on with my hands. Hips, mainly the right side, are so painful and my feet scream at me, I work in an office and I have been trying to make myself get up and walk at least every 45 mins, I have to stand slowly and wait for about 5 seconds for my bones to almost fall into place before hobbling away from my desk. Sitting for any length of time is painful, my bottom feels like it's really bony, but believe me it's not I have managed to lose 3.5 stone this last year but the pain hasn't diminished at all.
My Doctor booked me in for a blood test and x-rays and gave me two weeks of Naproxen to take. I had a call from one of the surgery receptionists to say that bloods have come back normal and x-rays abnormal so its wear and tear. Don't you just hate that phrase! My doctor wants me to go in for a chat but he's on holiday now till the 19th. I feel a bit like I am in limbo now, I don't appear to have any large joint swelling, only minor swelling in my 'deformed' fingers but I am really struggling with fatigue, to the point that my day job is suffering. This doesn't appear to be common with OA, or is it the constant pain that causes fatigue? I have finished the course of Naproxen, they did help to the extent that I could put my socks on in the morning but the pain was still there. Should I also mention that I have had a really itchy scalp for the last 6 months or so, I have no other signs of psoriasis though. I have now resorted to over the counter co-codamol first thing in the morning to get me to work, then anti-inflammatories though the day and co-codamol when I get back home to see me through.
I have a wonderful husband and grown up children who 'fight' to help a very independent me.
I think my question is how do you manage the pain, the tiredness and hold down a full time job and the running of a house? I think that I may approach my employer to see if it would be acceptable for me to work from home a few days a week, I can then walk around as I need to and use the hot cherry pip bag on my painful bones.
I think it's the thought of living with this pain is what is getting me down and I so admire you all - now where is page 193

bubbadog

Hi Nicole, Welcome to AC forum, I admire you working full time I ended up being fired from my job for having to much sick leave! I couldn't cope with going to when I could hardly get out of bed!! I would love to work still I loved my job as a P.A. Fighting fatigue and pain is part and parcel of Arthritis I'm afraid. We all find our own ways of dealing with it. Me it's a major amount of meds! (12 a day, 12 at night and several in the afternoon!)I have a massive bag that goes where I go!! And I do what I can in the morning then rest in the afternoon. We all have different types of Arthritis and I also have Osteoporosis on top of my R.A. If you have any questions just post them and we will all answer if we can. Welcome to the family!!

stickywicket

nicole wrote:

I think my question is how do you manage the pain, the tiredness and hold down a full time job and the running of a house?

Hi Nicole and welcome. I do apologise as I'm a bit pushed for time right now so I 'll cut to the chase, if you don't mind How do we do it? I'm not sure we do, certainly not all of those things.

Mine is RA. I gave up work to have my elder son and never managed to get back to paid work, only voluntary where I wasn't under an obligation to come in when ill. The tiredness I guess you get used to, especially once you realise you're not superwoman and somethings have to give. The pain? You get used to it. There are lots of techniques for dealing with it and referral to a Pain Clinic might enable you to find out and try some of them. Most people speak highly of them. Good luck

Boomer13

Hi Nicole;

As Bubba says, welcome to the family from me too.

I don't think many with chronic pain are able to manage to the work/housework schedule you describe! For me, (I've been medically retired for 3 years with PsA, oops I guess 4 years now) the first thing that happened was that I only did my job; I was in so much pain I could only rest in my off-time. When I stopped work I was in crisis mode because of wrist pain so that made doing anything at all impossible. While resting and hopefully recovering from that, the systemic arthritis kicked in and continued to worsen other joints making my normal life impossible to continue. That's how it went for me.

Like Bubba, I cope by taking a large amount of medication, and, the hope that I may get some function back one day keeps me going, but life is quite different now. Pacing myself helps and mostly I conserve energy for doing physical therapy. Mostly, housework doesn't get done except priority things and my husband is stuck with a lot of it but, it is amazing how much you can do if it's done in small chunks every day. So there it is for myself; medication, pacing, physical therapy. Life goes on even if you can't work or clean the house the way you would like!

To answer your question: yes, pain can cause a lot of fatigue. There is also heavy fatigue with autoimmune conditions so if you don't receive answers or specialist referral soon, please push for an appointment with a rheumatologist.

I developed the arthritis of PsA before the skin psoriasis. It happens and can confound your GP and lead to delays in treatment.

Best wishes, I hope you find medical help soon for your symptoms. There is a lot of support here on the forum too.
xxAnna

barbara12

Hello nicole and a warm welcome from me
I am sorry you are struggling, pain does add to the tiredness..you are probably having disturbed sleep through it
Has for the blood test they can come back negative but should be repeated now and then..I would certainly tell your GP about the itchy scalp..and asked to be referred to a rheumy they will ask all the questions and do more blood test..sorry if you already have some times I read things then forget some of it... :? x

dreamdaisy

I have two forms of arthritis, an auto-immune and OA and I don't do anywhere near as much any more, not because I don't want to but because I can't. I was self-employed but have stopped now because I couldn't cope with the mental and physical effort required - mind you I battled on for sixteen years before gracefully ceding to the outrageous demands of this dross.

Constant pain is tiring, active auto-immune arthritis is tiring (there are around 200 kinds of that so one blood test ain't gonna tell anyone much apart from it's not a sero-positive RA) and the extra effort we have to put into anything we do is also tiring. I now have no memory of good sleep, having energy or a pain-free life and I am thankful that is so.

Pacing yourself is the strategy, stop when you think you can do more and rest whenever you can. Whatever this is it is not going to go away. Please google The Spoon Theory and There's a Gorilla in my House - both provide very good explanations of what we (and those around us) are up against. I wish you well. DD

nicole

Thank you ladies for taking the time to reply to my ramblings. I think that it helps immensely just being able to share.
I have medical insurance through my company, though OA is classed as a chronic condition so will only be covered for a max of 6 months. However part of my medical insurance is through a company called HCML who deal with occupational health and yesterday they contacted me to offer an over the phone consultation which ended with them sourcing me details for a local private Rheumatologist (I am in the Norwich area). I have been instructed to ask my GP for a referral letter for a thorough 'going over' so I count myself extremely fortunate to have this option.
I have been making sure that I pace myself recently, I am so used to rushing around to cram as much into a day/weekend as I can so this is a real learning curve for me. Even to the point that I have had to re-think the families meals, I have always been a cook from scratch the whole week person but not so much now, or at least not so much during the week. Frozen vegetables are now my friends. Even my 30 minute drive into work is becoming increasingly hard, reversing the car to park is proving to be a nightmare due to stiffness of my neck, and I am relying solely on my mirrors at the moment.
Once again thank you for the comments and for the warm welcome x

stickywicket

You're a quick learner, nicole Frozen veg, cooked and stored properly, can be every bit as nutritious as fresh. I also find it easier to cook a lot for one meal then freeze the rest for a day when I have less energy and / or fewer resources. (This can mean wrestling it away from Mr SW ) I only discovered recently that it's perfectly safe to defrost frozen meat, cook it then re-freeze it once cooked. Even Take Aways and Ready Meals can have their place as long as it's not a frequent one.

I used my mirrors a lot too. Do you have power steering? That makes a difference.

Good luck with the appointment. Please let us know how you get on.

villier

Hi Nicole

Sorry I am late to welcoming you, I am glad to see you have settled right in, it is OA I have and a lot of other bits and bobs going on. I was like yourself used to cook from scratch all the time there is nothing wrong with pre-prepared food here and there when my hands are really bad. Good luck with your app and let us know how you get on.............Marie xx

nicole

Went to see the doctor today now he's back from his holiday. He said that the x-rays show significant damage to hips, lower spine and sacroiliac joint and neck - cervical?. All finger joints are affected and mid foot joints, funny how my knees are fine He said that the amount of joint damage isn't representative for my age and for that reason has referred me to rheumatology as he suspects that there is more going on. He said that he didn't want to prescribe me anything at the moment as the Rheumatology appointment will come through quickly - perks of having private healthcare through my employer. I cant wait for this appointment to come through, every day feels like a week at the moment. my neck is really causing me issues this week, last week it was my hands, I would have happily accepted the amputation of a finger. Everything is constantly sore but I cant believe how quickly the pain in some joints escalates for a few days then returns to its 'normal' pain level. Trying to stay positive about everything at the moment.....

stickywicket

It's good that you'll have an early appointment. I don't suppose it's of much consolation right now but they used to tell me that 'moving around' was good whereas sticking in one joint was bad. I guess when, like me, it sticks in all joints then you're in trouble I hope things don't get too difficult before your appt. comes through. Let's know how you get on.

ritwren

Nicole I don't know how you're doing it, working keeping house, cooking and looking after family. On top of all that you have serious joint condition of some kind. I do hope your appointment comes through soon. Can you ring the HCML people and check that the referral has been sent, where it has been sent to and then give them a ring?
In the meantime try to prioritise things as others here have said.
good luck Ritwren