Hands/Wrist

Have you seen those little rubber jar lid openening things, they are round and ribbed and you can open jars so so so much easier with them! I cant believe how wekk they work actually. I have a blue one that I would be totally lost without, easier than prising with a spoon.  I think ai got mine from betterware or something like that x

Hi Sandy..kids !!! Who'd have em...lol

Unfortunately I can't work n I miss the company. What drugs are you on as I've tried a few.just had MRI and see a neurologist Saturday as think last drug damaged me .I am jerking my body right to left when walking n spasming when sat.

Hi Frances. I know, kids can be really selfish! I have just been woken by my 18 year old daughter who thinks it is impossible to walk in the rain, cos even with an umbrella your shoes still get wet!! I put my foot down this time though as it is getting ridiculous and she just expects it all the time, blimey I wonder how on earth people manage to get anywhere in the rain without a car! Lol how did I survive till I was 21!!! 

I went for a meeting yesterday to discuss my return to work. I really don't know how i am gonna do it though but have to give it a try or i will lose my house. I have been on esa and pip since my wages stopped but it comes nowhere near to what I have to pay out. My mortgage is £750, council tax £100 and they did not give me much of a reduction, then of course with all the other bills I have been £4-500 short a month! My boyfriend has been helping me but leaves him skint, my parents have helped too and I hate relying on others. I had a bit saved, rainy day money so thats gone and I really have no choice but to try! My worst problem though is sitting! I really dont know how I am gonna manage! I will be expected to be going out to support people with mental health problems and take them out too, but I cant walk far or fast and often need a stick. How I will manage it, I really dont know. Whilst we were talking in the meeting about reasonable asjustments, all I could think was "who am I kiddin, I cant do this!" The sulfasalazine I was on had a bad reaction and I have been given nothing else. My hip and groin pain is constant, it NEVER goes and cripples me after sitting for more than 15-20 mins, particularly bolt upright, as in being at a desk. Nothing helps with that pain apart from on two occasions a prednisolone injection worked absolutely fantastic but for 3 weeks each time only. Subsequent injections had no or little effect. The cocodamol and tramadol help a little with the other joints, shoulders, hands, elbows etc and then oramorph when I am at crying point, but not with the hip pain, the only thing that helps is lying down and I cant very well do that throughout the working day. 

What drug was it that you think damaged you? It sounds awful!!! I hope they can sort that out pdq for you!!! X

Hello. I was reading your message and im in the same boat financially only I have a 10 and 13 yr who are a god send. One drug out of all the drugs I have tried is gabapentin. My groan and leg pain has nearly gone. Ive still got back, hand and feet pain but im sleeping 6 hrs a night which for me is great. Ive got to go back to work soon and to be honest im petrified. X

Oh Sandy you poor love. What a predicament you are in. can't you go back reduced hours n see how you go or ask your doctor sign you medically unfit permanently so you can claim ESA n disability.I am lucky that my mortgage is paid off else I would be in poo street. You must ho back to your consultant n beg him to put you on something else. Cry as well as they don't like that.

The drug you asked that I think has damaged me is rituximab. I was for about couple months after the infusion then started tripping up n struggling to get words out I wanted.memory crap too. Then 3 mths on right leg weak then another month same leg giving way n jerking body to left. I am also spasming like silent torrets.

You want to ask for gabapentin or pregabalin.its good for nerve pain.surprised you are not on more drugs.

Have a heart to heart with the kids n say unless you get help from them you will end up in hospital. Wish you well Sandy

Yes Donna gabapentin is good.I am on pregabalin which is the same.Same as I said to Sandy ask if you can go back on reduced hours then build them up. I was do bad I just couldn't do my job which was a cook so after been on sick for 9 mths boss called me in n said he wouldn't be able to offer me anything else. Relief as I was a mess n still am.that was 2013.I now get ESA and £21 wk disability.Its not a lot but it helps.

Hope I have been any help to you

Yes you have. I will return on reduced hrs if my consultant says I can. Not sure how I will stay awake. You take care. X

Hi frances, i do get esa and pip but that amounts to about£900 a month, my bills are £1600 including food etc, and they only paid a third towards my mortgage so I was still very short. I am going back on reduced hours and. Only oart time anyway with 18 hours, so will start on 9 which will be 3 hours a day 3 days building up ovr 4 weeks. The oroblem is the pain in my hip and groin after sitting in excrutiating. I have trued gabapentin, all I did there was out in a load of weight, tried pregabalin, trued sulfasalazine, so now for pain I have cocodamol, tramadol, oramorph and amitriptylene but nothing, absolutely nothing takes away this pain, i have felt like taking the lot on a few occasions! I am going to ask for prednisolone again as it did work marvellously twice but only for 3 weeks, but at least I had some relief! I could walk properly!! It was amazing! I need to go banging on doors!

I will avoid rituximab though! Siunds like you have had a dreadful time!

i have tried talking to kids I think they think I am just being lazy my son keeps telling me to push myself harder! 

Anyway thanks Frances I hope all goes well with you x

 

Maybe ai shoukd give the gabapentin another go! 6 hours is goid, I eitherr dont sleep at all or sleep for 16 hours! I want to go back towork, just scared Iwill be in too much pain and no use! But need themoney, my mortpgage alone is £750 and itsjust me paying, my boyfriend helps with bills but has his own flat too. Good luck x

Sandy the predisalone you need to taking it all the time.I am on 10mg a day.If I wasn't I would struggle to get out of bed.without it I couldn't move in bed and was coming down stairs on my bottom.I was told when they get my RA + fibromyalgia under control then I can come off it.few times I've gone to the consultant and he gets out the big needle and stabs my side with extra steroid. First time that worked for about month then last time just a week.

You sound a wonderful mother and kids can take advantage. Bet if you went on strike they would miss you.

Im lucky I have a partner I live with but paying debts from an awful abusive ex husband and the divorce. I am on 400mg a day. The 100mg. If u go on higher dose it does cause weight gain. Ive found dihydrocodeine helps better than cocodamol and tramadol. I hope u get on ok and your kids change their minds. X

I am actually not in a very good place today, well since last night actually. I feel everyone just waits for me to do everything. I went on strike and now the house is an absolute mess and I have no energy, enthusiasm or anything else to sort it. My kids moan about my boyfriend, he moans about them and I am sick of it all. I decided last night I just dont want to be in this world anymore, what is the point?! There are so many evil people around, I cry constantly seeing all that happens  and nobody does anything to stop it, not really. We just get on with our own lives and to me that is just not nice either, kids demanding, texts,pick me up, take me there, buy me cigs, pay my singing lessons, cook my tea. Never - are you ok, do you need anything!? I have decided I am not going to take my pills anymore, no antidepressants, no pain killers, no lansoprazole, cetirizine, statins or fenofibrate. My cholesterol was 15.9 and triglycerides about 28 which should be about 2, so i was apparently in danger of stroke or heart attack. If I stop my meds consultant said they will go right back up, they are keeping me alive. So if i stop taking them it willbe natural causes and the kids cant blame me. They will just have to get used to doing things for themselves I have had enough now. I wont be able to afford to buy them when I have to anyway. Sorry, dont want to lay this on anyone really, I am just so so low right now and dont want to carry on any more

so sorry you aren't in a good place. I'd only say that remember its not always like this and any decision you make now could have long term repercusssions that you really regret later. Again, sorry you are having a bad time but 'this too shall pass' is a saying I use a lot - I have it on a ring I wear (when my fingers aren't too swollen!). It helps me when the times are bad - they will pass. And also helps me when the times are good - best to really enjoy them as they pass too. Good luck and hope things improve soon. x

 

Thank you jo x

Things will get better for you over time and I just pray they will get better quickly. You are dealing with a lot. Please don't stop taking your pills, maybe your strike will help make people in your household appreciate you more just keep it up and give it time. Know that you can talk to me or anyone on here, we do understand and will try to help you feel better if we can. I know it's hard but you will get through this. Maybe you do need to be a little more selfish, and primarily work on allowing yourself to get and feel better, keep going for yourself. Allow yourself to talk to us at least when you need to . I will be praying for you, God bless. X

Thank you joanne. I know it sounds like I am being selfish but the battle is gettting more and more difficult. I have been on strike for ages now in the house, apart from cooking tea and doing dishes now and again. The kids are 20 and 18 and do nothing! My daughter is still in sixth form and I know. She is finding it hard, but my son is here all the time as he is on a year out and uses the excuse that he is working on his computer all the time, so wont do anything. He has no income at all and so cannot contribute to te household, but he, at least, could do some hoovering, dishes, cooking now and again. He is a really good cook too! My partner stays a lot but has bi polar so has been used to living with mental health issues dor the last 30 years and it is difficult for him to get motivated. Occasionally we stay at his flat for a break but my daughter makes me feel guilty for not being here, constantly texting me asking when I am coming back! He says we should stay there a few days but when we go just for the night, she texts from early morning asking when I am coming home and can i pick this up for her on the way! She will not walk to the shop! I have spoilt them both i know! It is my own fault, but i brought them up alone from the ages of 4 and 2 and have overcompensated cos their dad kept letting them down, breaking promises etc. Even with my illness I always managed to work and gave them everything! They have been to Mexico and St Lucia amongst other beautiful holidays and now i cannot earn a lot or do much around the house they just have a go at me! I just wish someone else would sit them down and make them see how much this illness affects me. I have told them to look up fibromyalgia and rheumatoid arthritis and i have a prolapsed disc too, but nothing I say to them makes any difference. When they were younger they were great. I have a bungalow now but when we were in the last house, some days I couldnt get down the stairs and they would bring bread, spread, cheese etc up to me and I would make them a sandwich. I had sciatica in both legs and they would go either side of me and help me walk. Now they dont even like bringing a drink to me when I am housebound! I awant to run away!! Well, hobble slowly away, get on a plane to cyprus and and swim in the sea and lay in the beach! I just don't know how much more I can take! I need help getting dressed and undressed, my shoulders ache so much I cant lift my arms, I cant bend, I cant hoover. When I do dishes sweat pours theough my hair and down my face and my back aches so much! When i chop veg my hands hurt dreadfully and standing to cook cripples me. Sometimes my son will come into the kitchen when i have almost finished, see how much pain i am in and half heartedlyasks if i need help! I am done! So he walks away. If I could see an end to this, if they worked or just helped a little I may be better. The stress, i am sure, makes it so much worse! I dont know how I am gonna cope in work next week! But I have to try or lose my house! I will need help getting dressed. It will be crippling driving and then I have to try to look like I am ok when I get there. I am starting with just a couple of hours a day over 3 days so I just keep thinking 'as long as I can get there, it will be ok' I know I am kidding myself! I cant sit, my hips and groin are so so painful. Oh blimey I just don't know but thank you! Xx

I feel like knocking their heads together to be honest! My heart goes out to u but u need to take control then u will sort those kids out.

I left my husband after years of abuse. We hid in friends houses and moved around until he found us. Finally I bought a house then he managed to get weekend access to my girls. He then physically abused them until I found out when he bruised and burnt them. My world ended that day. After 5 long yrs me and the girls have rebuilt our lives and I have met a lovely man. I am a carer for my sister who has ms. Just as I thought finally my life was back on track this has come. I now struggle to help my sister. Sometimes I feel why me and I want to give up but I can't. I hope my girls dont change.

Please be strong and make your kids understand. Your lad needs to get a job and contribute like the adult he is. Sorry but u are the important person here not them.

All my love and luck. X x

Now come on Sandy you will only make yourself worse.You have all of us on here as friends now to help one another.I had bad thoughts myself and still do but I wouldnt do anything.I would end up a cabbage and I dont want that.I am going to need you after I have been to neurologist tomorrow and find out my MRI result We have to be strong for each other.

Sounds awful but soon the kids will fly the nest.teenagers can be awful.the more you do for them the more they want .never mind teenagers my 2 girls don't bother calling unless I invite them for tea.I can't mind the kids for them so am redundant. Only people that bother is my two sisters.do you have anyone to unload your problems on?Can you see an occupational therapist.

I would advise not replying to the texts when you go to your boyfriends.it is just your time then. Please seek help x

I am so sorry you have been through such a dreadful time! And your daughters too!! What a dreadful man!!! It makes me feel very selfish for feeling like I can't cope! How on earth have you come through all of that?! I hate some people in this cruel and selfish world! Why is it those type of people get away with evrything?! Why is it the good that suffer?! I wish I had a gun, I would do time to get rid of as many nasties as I could and I would be proud to rid this world of such beings and at least save some people! 

You are so lovely and thank you for your support. You need support too and lots of it! My best friend has just found out she has ms too. When I think back I used to support someone who claimed to have ms. i was carrying her shopping with back pain and sciatica and there was nothing wrong with her! Once I visited on a tuesday and when i came back on the thursday she had painted all of her ceilings herself!! I was carrying her shopping for goodness sake! She would go on ms forums and tell everyone to stop moaning about their illness and just get on with things like she did! One guy i supported who also had it couldnt even lift his head up, I had to hold it up for him. I just cannot believe some people can feign illness when others are genuinely going through the agony of that illness and then they mock them! 

I was only saying the other day how lucky i am that I have warmth, fresh running water, a tv and radio, my loving dog and cat by my side etc. i guess I have to keep reminding myself of that when I get these feelings. Maybe I just need to up my dose if citalopram and stop whinging. I am sorry! And I wish you all so much luck and happiness!! Xx

Thank you Frances, I know I am being selfish and  really don't want to be! It does happen now and again and I do usually get through, as Jo said earlier, feelings pass, and I know they do. Sounds mad but I actually dont want the kids to leave, I just want them to take some responsibility. I think I may just go off for a couple of weeks and leave them to it. My son is 21 soon so he will just have to cope. My daughter is 18 and quite capable. My son is in uni but has a year out which was supposed to be an intern. It went wrong they were just using him and bullying him, so he rarely moves from his computer and is trying to become self employed as a web designer.  I have seen occy health and had some telephone councelling. I actually work in mental health too! 

I wish you well with your neuro tests! Please let me know how it all goes! Xx

U are not being selfish at all. I come through it and so can u. I call it my roller coster ride with all the ups and downs. Please try to stay strong. U are a good person and say that each day u open your eyes. Do u have friends or a hobby.

We are all here to talk to. X x

Thank you Donna! I dont see any friends any more and avoid the phone to be honest, we text each other now and again but i hate moaning about things and find it hard to sound upbeat so just send brief texts. I play chess online cos I do spend most of the day just lying on my bed. When I have good days I walk the dog, otherwise my boyfriend will walk her but he doesnt drive so she cant have a run off te lead. I used to love being outdoors and would be out all day with my old dog jess, I lost her last year and stupidly got another puppy after just constantly crying. This pup obviously has loads of energy and I just cant keep up with her but at least it forces me out some days. I know i have to just push myself. You are amazing! I am so glad you got through all that! Xx

Your friends will not see it as moaning. Try and have a coffee even if its for an hour. I lost my dog last year too so I know how hard that is. I know your job is mental health but have u tried cognitive therapy. It was my lifeline to assert myself.

Not sure where u are from? Im more than happy to join u in a moaning session.

You are amazing. So keep going. The summer is coming. X x

I cant wait for some warm weather! I would love to just take off to cyprus for a month to sit in the sun and swim in the sea. Actually I found hydrotherapy and saunas great a few years ago when it got really bad. I do cbt, so should really concentrate on that. Now that my finances are getting sorted, well a bit better, I will be able to afford to join total fitness and just use the pools and saunas, I am sure that will help. I am also about to start some phone work from home so that will help too, once I get my head sorted a bit! 

I am near Chester, where are you? Xx

Good idea. Your more positive already. Cbt on yourself is probably more difficult. Chester is lovely. Im Coventry so not miles away.

I need to sort my finances too. Im new to ra so will see what consultant says then I can make some decisions. X

If you are able to work, it is so much better. This last 18 months has been horrendous! If I had just pushed myself maybe or asked for more help when I was in work I may not have ended up this bad. But they really werent listening! Even when I went for my meeting and the manager introduced me to the team, she asked if iminded her telling peoplewhy I had been off so long and i said no. She told them i had a prolapsed disc! She hadvery quickly forgotten about the ra and fibro and the fact that it gets me all over, not just my back, in fact that is nowhere near the worst.  If I can make the home job pay at least I will have something to fall back on but my head needs to be in the right place to do that! I am a psychic reader!

I do feel a bit more positive, put things into perspective. Thank you and thanks to Frances too and Joanna and Jo xx

Yes my boss is horrible so dreading it but I needvto return even if its a few hrs aday. Beingvat home u have too much thinking time.

Im glad your feeling more positive.

How do u do a reading on the phone. I thought u had to touch something. Pardon my ignorance but im fascinated with that sort of thing.

My email address is _______ if u want to vent. Also keep me updated on your progress. X

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Mod deleted your email but you can send it in private message.

psychic readings are mind to mind so you dont need to touch anything, although some people do it that way. I use tarot to help me tune in and I am a medium too so if people want a spirit reading and there is someone with them i can usually see them too if they show themselves to me. Like I said though my head needs to be in the right place for that. I have worked for two companies in the past and have joined another one now, but need motivation before I start. I have loads of sets of tarot and oracle cards and usually when I am feeling low I turn to them for direction and it does help, but i havent done them, should do!! 

Well i slept about 15 hours again, didnt wake till 3 again! How i am gonna get to work on moonday I dont know! Lol but thanks to you and frances and the others on here i am getting there!

thanks again xx

Hello. Yes didn't know I needed to do that. Oops. U should do it. I love that sort of thing. I stopped myself sleeping today by setting my alarm and I cleaned the bathroom! !! Very pleased with myself. Ive stayed awake all day. Im shattered but will keep going til 10pm. It is a good day though so not sure what ill be like tomorrow. I will message u. Take care amd speak soon. X

Ive sent it through private message. Well I hope I have lol.

Hi Donna, I didnt get it i will try to send you one lolx

 

Evening all. Sorry to jump in on your conversation. Glad you n Donna getting on n supporting each other.

I said I would update you on my appointment with neurologist today. The MRI ok but now wants one on neck n spine. He said its not the Rituximab at fault as it would show on scan.Did a reflex etc test on me n ruled out Parkinson's n MS .Not sure what my jerky spasms and jerky in balanced walking is so also have to have EEG n memory test etc.Said my RA very severe n was sorry he had no immediate answers.he doesnt agree with all these severe drugs I have had but he said rheumatology wasn't his profession.He said he would keep at it til he found something n if he couldn't he knew people who knows more than he does in Harley st n Sheffield.Had few tears making myself look a mess then husband took me to buy a new top in New Look to console myself ...lol

Oh blimey I am so sorry Frances! So it wasnt the meds that started all that. Can he be certain after all this time though? I was wondering how you had got on . So will you be able to take anything else, especially now the ra is so severe?! I am not surprised you had a few tears! 

When are you havng the neck and spine mRI? Hopefully that will show something, but insist on another one if it doesnt, cos. had two that apparently looked fine and then another one my rheumatologist ordered showed the prolapsed disc! How the others looked fine though I really dont understand.

good luck, thank you for all if your help! I hope you get to the bottom of it and please let me know! Xx