Hell continues without a break: Still in considerable... - NRAS

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Hell continues without a break

LavendarLady profile image
13 Replies

Still in considerable pain. Can't put my feet down to the floor as they are so painful and swollen. Shoulders (both) are letting me know they are there and I have agonising pain in my groin on the left side which spreads right round and down my leg. Makes it very difficult to even walk so limping badly on that side.Also my leg is swollen and hot but does go down at night with resting. I have had this happen before but on the right side and it takes 2/3 days to settle down again. Think I will need to get my circulation booster out as I do find that helps. Still getting very little sleep and what sleep I get is not restful so waking up exhausted and wishing I could stay in bed for the day.

Hands at least have gone down but are still stiff, and knuckles still swollen and painful but wrists not as hot as they were although my knees are giving off heat like an oven. Enbrel day today so hoping that will help. the MTX yesterday didn't help at all so had to rely on Nurofen to control the pain and inflammation.

My friend came to supper last night and I did a shepherds pie which was simple and we had left over Alabama Rock pie for dessert with cream.

Going to try and have a quiet day today. The dishwasher is on as I forgot to put it on last night and I need to get some washing in as well but don't really feel like doing anything. Should have gone into work today but had to ring in to say not coming as felt so rough. It took me an hour to get going this morning. Had to put the hoover round yesterday as both dogs moulting and enough hair picked up to stuff a cushion. Haven't done the upstairs - that can wait I think. Cleaner not in this week either.

Now worrying what else may be wrong with the pains in my leg, as well as being called to an earlier appt with my consultant following the x-ray on my shoulder. Even thinking it might be bone cancer then common sense tells me if it was serious, there would have been urgent phone calls from GP, consultant etc. so can't be serious. Really feel like death warmed up - the sun is out so hoping it might be a bit warmer today although the heating is on in the house. Moans over. LavendarLady x

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LavendarLady
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13 Replies

Hello LL, even when your down you still manage to mention yummy food in your blogs that always make my mouth water :)

I don't even know what Alabama rock pie is!!

I'm so sorry your having such a bad time at the moment, sounds like a pretty bad flare, don't you get offered a steriod injection when your this bad?

xx

LavendarLady profile image
LavendarLady in reply to

Unfortunately, no on about to offer me one this week as my GP is dead against steroid injections - she worries about my bones! See my consultant in January so if still bad then, he will give me an injection. I could ring one of the other GPs but he will only treat topically - i.e. if your shoulder is had, he'll inject that but won't do an overall steroid injection which would bring down the whole inflammation. Life is a bitch at times! LL x

Gina_K profile image
Gina_K

Hi ll,

Best advise at this point is total rest, and that is to bed for day, you are doing, and have done to much over Xmas, your body is telling you to stop. I am only saying what your mother would say if she was here.

Heat a light blanket in your dryer, put on your pjs wrap blanket around you insert 2 painkillers and into that bed for rest of day. Now, no stiff upper lip and suffering away - do it now.

Sorry to beso bossy, but your blogs tell me you r doing too much. even making a shepards pie and light hse wrk to much at moment. For shoulder ice for 10mins then heat for 10 repeat until pain eases, best circulationtreatment.

Where's hubby golfing like my guy, I expect, either golfing, having a few pints or asleep in chair:)

My cleaner also on week off, but I will await her return for dog hair issues.

Be god yourself please.

Gina.

Grammie profile image
Grammie

LL, I am so sorry you are in so much distress. If I could I would take it away. I really would. Steriods make me mean and I cry alot. But they do help. I just try to stay away from everyone. Do you keep predinose tablets on hand for such times? My Dr does not like to give me a script for them. I only use them when it is bad. I am from Alabama but if do not know what Alabama Rock Pie is. Please know that you are in my thoughts and prayers. Take care. warm gentle hugs are being sent your way. God Bless Linda

helixhelix profile image
helixhelix

I agree with Gina - to bed with you. Take something warm, whether blanket, wheat pillow or hot water bottle and place a warm animal behind your knees, a cup of tea beside you and doze as much as you can. And if the cleaning bugs you then take your glasses off and don't look! I have a heap of favorite books beside the bed, and I can pick any one of them up & start reading wherever it falls open as I know them so well. But means that no mental effort needed so I find I soon drop off even when in some pain. Keep warm Polly

LavendarLady profile image
LavendarLady

Hi all, thank you for your lovely support and advice. Himself is upstairs in his study trying to book a hotel in Bournemouth for a conference he is attending in April. I have a cashmere shawl round my shoulders - just about to get out the Enbrel to warm up before injecting and to have a hot coffee. Wish I could stay in bed for the day but will compromise with my recliner chair downstairs - being nosy I like to know what is going on in this house! Berry my lovely beautiful labrador is with me and Tilly the other one is upstairs with hubby. The cat is in the sitting room on the radiator - She had her 10th birthday on the 27th so her joints are feeling the cold as well!

Linda, Alabama Rock Pie is a chocolate mousse type with chunks of marshmallow in it on a biscuit crumb base with chocolate topping. Very fattening, rich and scrumptious! No I don't keep steroid tablets in as my consultant prefers me to have an injection as and when. He took the view that if on tablets I would then never be off them again!

Had some lovely books for Xmas and have started reading one of them and always have several books around the house which I dip into where ever I am for a quiet read. Will close now and get that coffee. Love LavendarLady x

Your doctors sound like mine LL in that they won't give me any stronger NSAIDs than ibuprofen and discourage steroids for me unless it really is an emergency because of bone density probs and other gastric side effects that they think these might cause long term. In a way I'm very relieved because, as your consultant says, once you get started on the stronger stuff it's very hard to come off it. I also think I should always save my 2 week supply of pred in the medicine cupboard for times when everything flares and so far it's only really been one set of joints at a time for me - I know I'm lucky in this way as a total all body flare like you seem to be having would definitely call for something stronger than ibuprofen I feel but you know best in this regard.

But I also have a feeling that while we keep our friends close we should keep our enemies even closer where humanly possible and for that reason I prefer to know where pain is so I know where the RA is doing it's damage and what to rest up etc. That's why i take a day off the ibuprofen once a week on MTX days because it reminds me of why i need to these toxic little pills! But I'd be sorely tempted to take some steroids if I was in your shoes just now - I don't think a two week high dose is as harmful to bones as being on lower doses for long periods - or so I'm told anyway? Good luck and do try to rest up and watch telly, listen to the radio or read a good book with a nice wheat bag and plenty of blankets as everyone keeps telling you to! TTx

sylvi profile image
sylvi

LL,you must now rest my friend. Yes its easy to tell you to rest and you know thats what you have to do,but as i've found out its easier said than done. We're woman and we don't understand how to sit and rest. I'm on more antibiotics and bot have i had to stop. My body has let me down badly and i can't do anything at the moment. I think i have pneumonia by the way i'm feeling and having had it before.

All the advice from above ladies apply it is good advice too. Please be good to yourself my friend. As my mum used to say the cleaning will be there long after your gone and never a truer word spoken.

My love and thoughts are wending their way to you.

sylvi. xxx

Yes LL, Take the kind advice form every one here and rest.. I keep saying you cant be superwoman all the time.. gosh your food sounds as yummy as ever xx

sylvi profile image
sylvi

How are you feeling today,brighter i hope. I don't say better as those of with don't get better,we just get brighter.

Love to LL. sylvi. xxx

LavendarLady profile image
LavendarLady

Hi all, well I took everyone's very sound advice, tucked myself up on my recliner with a shawl round my shoulders, the cat on my knee, the fire on for extra warmth and went to sleep! Felt heaps better after an hour or so's sleep, continued to rest with feet up until early evening when felt well enough to get some dinner ready. Read one of my Michael Palin books which I had for Xmas and felt a lot warmer when he was describing the Sahara desert!

Went to bed early at 10 p.m., read for a little while and then slept through until 5 a.m. Tilly decided that was the time to come on the bed which she did and I couldn't get her off - she was quite determined! So dozed until 7 when Himself got up to go and play golf and then went back to sleep until 8.45 when I thought I ought to get up myself!

Still got an aching back and legs but much better than yesterday and the few days before. Also hands and wrists have settled as have the swollen feet which have gone down. Knees still sore but again better than they were.

Thank you all for your support, love and friendship. It makes such a difference. LavendarLady x

Mel_ profile image
Mel_

sorry not up to much so short and sweet; Get lots of rest and look after yourself. You offer a lot of support to others on here so, along with everyone else, I'm thinking of you.. Mel x

sciqueen profile image
sciqueen

Hi

I hope your flare ends soon, you sound so painful.

Ops you seem to be recovering in the update.

Please try and get some rest over the new year, your food sounds so good, but shop bought goodies at this time of year can also be good!

Hope you have a good new year celebrations.

Take care of yourself

Sci x

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