New and Blue

mirendou

Hi I am new and finding my way round, A little bit about myself before I start to moan, I was diagnosed with Fibromyalgia in 1977 and with Rheumatoid Arthritis 7 years ago but have recently moved so have to wait till June to see a new Rheumatologist in this area. At the moment I am suffering with low back pain and both legs ache like mad and they are getting me down, have been to the Doc and he (he’s new as well) said after examining my legs its nothing serious which is fine but doesn’t make it go away and doesn’t stop me wondering what it is.
It is affecting my sleep big time and making me a little grumpy to say the least so what with the RA and the Fibro I think I’m going into pain overload.
Does anyone else have leg pains (like toothache all over both legs and can move from one to the other)lower back pain is there but not agony yet.
Sorry to go on but hope someone can help or at least sympathise LOL

dreamdaisy

Hi mirandou, I'm new too, only joined on Thursday. I have PA and live with constantly aching legs, yes, it is exactly like toothache. I'm flaring at the moment so the pain is also in my ankles, feet, hands and jaw. It is debillitating and demoralising. I have co-codamol 30/500 for every-day pain, tramadol 50mg for the more severe, and liquid morphine for the 'God I want to die' days, which are thankfully rare. Finding effective pain relief can be a struggle, normally 'cos those who prescribe the meds don't live with pain levels like us. I was lucky enough to see a doc who had worked in a hospice, so he understood how important pain relief is. Never underestimate the value of crying in front of your doc, especially if you never have! Moving to a new area is always tough, you can feel as tho you are at the bottom of a very long hill as you struggle to make the connections you need. Good luck with it all and I hope things improve soon. There's lots of help around here, keep reading! Dreamdaisy

mirendou

dreamdaisy wrote:

Hi mirandou, I'm new too, only joined on Thursday. I have PA and live with constantly aching legs, yes, it is exactly like toothache. I'm flaring at the moment so the pain is also in my ankles, feet, hands and jaw. It is debillitating and demoralising. I have co-codamol 30/500 for every-day pain, tramadol 50mg for the more severe, and liquid morphine for the 'God I want to die' days, which are thankfully rare. Finding effective pain relief can be a struggle, normally 'cos those who prescribe the meds don't live with pain levels like us. I was lucky enough to see a doc who had worked in a hospice, so he understood how important pain relief is. Never underestimate the value of crying in front of your doc, especially if you never have! Moving to a new area is always tough, you can feel as tho you are at the bottom of a very long hill as you struggle to make the connections you need. Good luck with it all and I hope things improve soon. There's lots of help around here, keep reading! Dreamdaisy

Hi thanks for replying sometimes it seems that you are on your own, boo hoo I was getting worried which is silly but thought it was circulation as didnt realise RA or anything like it could cause leg pain but was exspecting better result from doc dont think he realised it was bothering me, Oh well he was a mere man LOL hope you are not to bad which is so rubbish a comment sorry thanks again


Hi

speedalong

Hi and welcome Mirendou and you too, Dreamdaisy.

I'm sorry you are having a hard time - pain is horrid isn't it especially when it is as sharp as toothache. I get that at night sometimes and evenings right in the side of my hip and it moves around in my buttock too.

Do you have meds from your last rhumy/GP to last you until you get a new rhumy in your new area?

If, they are not working sufficiently at the moment then annoying tho it is go back to the GP and ask what else you can take to tide you over until hosp appointment comes through. Doesn't matter whether the cause is "serious" or not - the issue is the pain.

Moving to a new area and all the upheavel and extra physical stuff has prob set off your problems.

Hope things improve - let us know.

Speedalong

dreamdaisy

Hi mirandou. You're not on your own, we're all here to help. RA is painful, I have yet to hear of an arthritis that isn't! I have a similar form of arthritis, psoriatic, which also causes inflammation - it's that that hurts. This is the place to come and sound off 'cos we all know how you feel! Your last comment wasn't rubbish. Telling me that you've found a cure for it all - just wear pink washing up gloves - now, that would be rubbish! It so happens I'm having a lousy time at the moment, but it will pass. It always does. It just seem to pass more slowly than the good times ending - that's always too quick! I have also radically altered my perception of what a 'good time' with PA might be. For me, it's only having 4 painkillers a day. Let the good times roll! Now off for Tramadol and a good sleep. Happy Saturday! Dreamdaisy

mirendou

speedalong wrote:

Hi and welcome Mirendou and you too, Dreamdaisy.

I'm sorry you are having a hard time - pain is horrid isn't it especially when it is as sharp as toothache. I get that at night sometimes and evenings right in the side of my hip and it moves around in my buttock too.

Do you have meds from your last rhumy/GP to last you until you get a new rhumy in your new area?

If, they are not working sufficiently at the moment then annoying tho it is go back to the GP and ask what else you can take to tide you over until hosp appointment comes through. Doesn't matter whether the cause is "serious" or not - the issue is the pain.

Moving to a new area and all the upheavel and extra physical stuff has prob set off your problems.

Hope things improve - let us know.




Speedalong

Hi speedalong I have to admit that since being diagnosed the only thing I have used is ibuprofen and paracetamol as I know through my dad how bad the drugs can be for you, I am taking Paracetamol and suffering, no that sounds mardy I usually have a high pain threshhold but this seems to be getting to me, also I gave up smoking christmas day 2009 and think thats brought on a bit of a flareup but still got to be better for stopping I think LOL So long as I know that the worst is that it is the RA or the Fib I can live with it and this site seems so good so will keep coming on thanks again.

mirendou

I just think that this is one of the meanest diseases thats going around and of course you are going to tell me that wearing pink gloves does cure it arent you yippee knew there had to be cure.
If you read things on the internet it can be even more scary when it goes on about your heart and every thing which I hadnt even read about till today eek should have not google LOL glad I can be sane on here though.

speedalong

Hi speedalong I have to admit that since being diagnosed the only thing I have used is ibuprofen and paracetamol as I know through my dad how bad the drugs can be for you, I am taking Paracetamol and suffering, no that sounds mardy I usually have a high pain threshhold but this seems to be getting to me, also I gave up smoking christmas day 2009 and think thats brought on a bit of a flareup but still got to be better for stopping I think LOL So long as I know that the worst is that it is the RA or the Fib I can live with it and this site seems so good so will keep coming on thanks again.

Hi Mirendou, I hate taking meds too - but have got them at home. I don't take them all the time or even at the full dose - but I have them for when the pain is at it's worst and my tolerance is at it's lowest. Being aware of the pitfalls of meds is enough to stop you doing damage by taking too many. Chronic and constant pain isn't good for you ... It's all about finding the right balance for you.

What else do you use to help with the pain? I find wheatie heat bags are great, some folks use ice packs too. I use cabbage leaves on my knee when they are swollen(!) bandage one to my knee for the night - works on inflamation a treat!! Aromatherapy oils in the bath help too - when I have time.

Speedalong

dreamdaisy

Hi mirandou. Firstly, don't believe what you read on tinterweb. Most of its rubbish, unlike the stuff you find here. Secondly, sort out your pain relief. (That sounded bossy - sorry!) I dimly remember something about RA and PA sufferers avoiding ibuprofen, I think it worsened symptoms or somesuch. Paracetamol isn't enough - we need painkillers with clout. I'm on co-codamol 30/500 for every-day use. It can cause constipation (yes, for me) and it can be addictive (no, for me). I too gave up smoking 'cos I couldn't be bothered to go into town to buy them (loved Gitanes, only sold by a specialist tobacconist). I have not noticed any health benefits, but I do smell a little better! I've made my GP happy but my blood pressure has risen since I stopped - another con by the so-called 'health professionals'. Am seriously considering starting again, perhaps only for the summer. I need another small pleasure in my life. White wine alone ain't enough! Here's to pink gloves. Dreamdaisy

mirendou

My dad guinney pigged certain drugs years ago for his Arthritis and all the other forms of it he had like spond etc, he had and ended up with gang green in his stomache through drugs and died at 53 mind he did purple hearts and some drugs that have since been banned so not the same I know but still a bit of a put me off.
Yes I use hand splints when its bad and the wheat bags are great and I think they do help and oil massages when can get one of OH.
Where I lived before they were quite good not sure how these will be here though, before we moved the estate agent who did our house had RA just but its funny I dont know any one with RA personally now if you see what I mean.
Is it not that common and even when went to see the consultant the others didnt speak to me??? but there was only 3 with RA rest had other forms.

mirendou

I didnt think bossy just concerned Im not getting enough dope LOL cant take Ibuprofin since having dodgy ecg last year doc put me off them big time but had echogram and all was good scary at the time though, cant take cocodamal we as in my sis and me have bad reaction to it so will have to find something stronger than paras My inlaw reckons its all in my head, doesnt matter that the blood tests and exrays show bad thing shes a bitch some times LOL thanks for chatting to me its good, Im in leicestershire are you in scotland were loads seem to have it ???

dreamdaisy

Your inlaw is damned lucky she's unaffected, ignore her. Don't talk to her about it, just say you're fine, even when you're not, and move the conversation on. There's obviously a long family history with you and that's tough. There are many kinds of painkiller out there so keep trying 'til you find one that fits. I'm not in the Midlands, but I have one friend with OA, one with RA and one with PA, like me. Ours is the rarest, so we win! Take care. Dreamdaisy

mirendou

Should be glad then shouldnt I, hopefully will meet someone who has RA Daughter in Law has after 5 years finaly been diagosed with lupus which is bad she is only 28, speak again soon I hope
And you take as well, have a good weekend `

dreamdaisy

Hello again, last post tonight, can't believe I've sat here all afternoon! Thro this website I have discovered there's a support group that meets in my town once a month, so I'm off to the next meeting, arthritis permitting, just to see what it's like. See if there's one close to you. Check noticeboards at your local hospital, mine has all sorts of notices about help groups and my rheumatology department runs a weekly meeting on Wednesdays for us sufferers. I'm based in the East of England, being more central you may have more than you realise available to you. Look in the small ads of a local paper too - amazing what they have in them. I'm used to coping on my own, doesn't bother me, often wonder if spending too much time with fellow sufferers, face-to-face, might have a depressing effect! Dreamdaisy.

mirendou

yes possibly like going over symptoms and catching them :? will have a look though have fun keep in touch

dorcas

Hi mirendou and welcome to the forum glad you have joined us on the forum but am sorry you are having such pain!

I've just registered too with a new gp as I'd moved house last year and thought it was time to stop driving a round trip of 80mls to see my previous doc. :roll: It is unsettling at the best of times to start with a new doc as they don't know you well enough to assess right away how your symptoms 'fit' with your existing condition.

Even so...it is important to have effective pain control. I have read what you have shared about your dad...that must have been very traumatic and it's understandable you feel as you do about any heavy duty meds. Have you had the chance of discussing this with your gp? perhaps he could refer you to a pain clinic for assessment and information about alternative methods of pain relief....tens perhaps? (I've not been to a pain clinic myself so this is third hand advice from others who have benefited)

Would it be worth telephoning rheummy dept to ask if they have any emergency/ cancellation appointments? seems unfair for you to have to cope with the level of pain in your back & legs.

Iris x

mirendou

Hi Iris yes in fact the rheumy dept are being great they are are going to put my records forward to the rhematologist to try and get me a quicker appointment, my new Dr is about as much use as a chocolate fire guard, I think hes too old :? it is good though to have others that know how you are feeling and can relate to each other I havent got to cook today as we are going out for dinner so thats nice as when Im in flare up I struggle to do the prep for meals and OH is a crap cook dont tell him I said that.
Its been raining here last night but lets hope it warms up again this is the worst weather I find hot then cold sooner have one or the other??

jenniet

Hi there.
Sorry you're in so much pain. When I was first diagnosed with RA I felt much the same but I was prescribed pain killers and anti- inflammatories and had steroids to keep me going whilst the DMARDs kicked in. I know the drugs look scarey when you look up about them on the internet but they really have made a world of difference to me and lots of people have been taking some of them for a long time now so they're pretty well tested. I'd look into giving them a go, you can always stop if you don't like them!! and they should also help to slow any joint damage which can't be a bad thing. Good luck!
Jenniet.

mirendou

Yes you could be right and maybe having been lucky enough to have not used them for the duration of my diagnosis ie 7 years+ it may be time to look at them I have just had a walk down to the village with OH and I cant believe it but my knee hurts like crazy what is going on I have never had a problem with my knees, shall just ignore it LOL and it will go away.

dorcas

mirendou wrote:

I havent got to cook today as we are going out for dinner so thats nice as when Im in flare up I struggle to do the prep for meals and OH is a crap cook dont tell him I said that.
Its been raining here last night but lets hope it warms up again this is the worst weather I find hot then cold sooner have one or the other??

Hi mirendou,

I'm glad you are going out for dinner and I promise not to tell your OH he is a rotten cook (although I suspect he knows that already :roll: )

I'm off out shortly to have lunch at/ with my daughter so no cooking for me either.

It's raining here and just miserable. but hope the sun decides to shine where you are. Sunshine is always better than rain!!

Iris x

mirendou

Yes you could be right and maybe having been lucky enough to have not used them for the duration of my diagnosis ie 7 years+ it may be time to look at them I have just had a walk down to the village with OH and I cant believe it but my knee hurts like crazy what is going on I have never had a problem with my knees, shall just ignore it LOL and it will go away.

dreamdaisy

Good afternoon, my pink-gloved friend. I hope you had a lovely lunch. The Husband and I were going to go out to one of our favourite places, on the promise of a good weather forecast, but it's cloudy and raining and as I fret about the increased risk of falling over, we stayed in. Crutches are wonderful for extra stability but they double the likelihood of skidding! The falling over isn't so bad, it's the struggle to rise when the knees do not bend sufficiently. Enjoy the rest of your day. Dreamdaisy.

jordan7j

Hi Mirandau and dreamdaisy, sorry you are having so many problems with pain m, the back pain can be bad, I have that too, and been told it cant be RA as it doesnt usually go to your back!! the legs aching too, especially at night, and goes into the hips. I am on tramadol 100mg 4 times a day and paracetemol. I still work full time with babies, so need to be mobile. So far they wont give me anything else for pain, no idea why. Just given me amtitriptyline at night 25mg, which doesnt work either. You're right, they dont understand as they dont live with the pain we live with. All they say is paracetemol is a very good painkiller, yes, if you have a headache etc, it is, not for what we have.
Anyway, moan over, and take care Jay x

dreamdaisy

Hi jordan7j, sorry to hear you're having a rough time too. Regarding your pain meds, you could be close to the strongest you can get! I have co-codamol 30/500 for every-day pain, tramadol 50mg for the tough times and oromorph for the 'God I want to die' times. I can't work and take tramadol, I save that for night time so I can get some sleep. Pain hasn't stopped since 1997, used to it now. I don't see why you can't have RA in your spine, it's all joints after all! Everybody is different, everybody reacts differently, we're all unique. Good luck with it all and keep strong. Dreamdaisy

skezier

Hi Mirandau a welcome from me as well they are a good lot here. I really hope they will get you in and help you soon and well fingers crossed your knees do go on their own accord. Nice to meet you Take care Cris.

Hi Jay,

How you dong? I have to say I got oa and pa in my back and neck so think if pa can ra probably can as well. Hope you can get some pain help that suits you and that your not over doing things there? Cris x

frogmorton

Hi mirendou!!

welcome from me too Good to meet you.

You are in a state and i'm not suprised only taking paracetamol and ibuprofen indeed :shock:

You need to see someone and may well just have to survive till then.... Having said that referrals can be chased - and chase it up I would.

Have you tried (or has anyone else suggested) wheat bags (heat) or ice packs (cold) to try?? Rubbing in the gels can help a little to esp if someone else does it - I think it is soothing and a bit like a massage

For now keep talking and we will keep talking too till you get the proper help you need

Love

Toni xx