theres no cure

Bones, joints and muscles
1

why do people think the doctors have the answer, as far as i am concerned i am managing better than most people on GPS med,

even my GP says i do well, and he agrees that its best to avoid the meds if i can , his impressed that i use acupunture, and other alternatives ,

people should take responability for there health, and not reley on strong meds.

iv spent a lot of money ,trying all sorts of alternatives ,and thought of giving up many times , the pain can be intoerble and when the fatigue hits its unbearable ,because i couldnt sleep because the pain wouldnt let me.

but i never gave up and now iv found a routine and the right alternatives to help me get thru, i slept from 12.30 am last night till 10am this morning  i have never slept that long so i know what i am sticking with.

DONT give up on excersise just a little every day otherwise your get worse.         regards tina

2

I personally am still comming to terms with my diagnosus and still learning to manage it. My GP is great and has a lot of good advise. I do use strong meds at the moment as its the only thing that helps me get through the day. I cant even manage a 10min wslk without been floored for days and with having 3 young girls to look after I have to choose my activity very wisely. 

Its great that youanage without the use of meds etc but everyone has different levels of pain and fatigue etc and have very different ways of managing the condition. I aim to be med free and managing regular excercise but unfortunately for now I need my GPs help and advise.

Hope you continue to manage  so well smile

Regards

Emma

3

you are obviously very lucky that you can afford alternative approach. I have suffered over 20 years and fought back to work aft being housebound fr 4 years. I pushed myself and pushed myself back to work and managed well for the next 15 years. After suffering with depression, loss of job etc, it came back with a vengeance. When you cant get out of bed without morohine and have to hold on to everything to get to the loo, its not helpful being told to get on with things! I broke my hand last year falling trying to get onto the toilet. Good for you that your doc is impressed with you but don't make people on here feel they are not bothering to try, we all have different levels of pain, and I am glad you have not reached e more severe levels, but that is not the case for everyone! I try when I can. I have just returned from a narrowboat holiday where it was incredibly physically challenging, now I am suffering but it was worth it, even though the only way I could manage was lots of morphine. Please don't be so harsh on other people when you have no idea of individuals' pain!

4

you are right Emma, we all have different pain and know that some days are absolutely as bad as they can b whereas others we can manage better.  Would be wonderful to get thru the dy without strong meds so we wouldnt o it if we didnt have to! I managed mine very well until about two years ago,now my hip pain leaves me crying through the night and my legs and arms going numb doesnt help. Mst be difficult with 3 girls to look after. Mine are 20 and 17 now sonot so badbut they could do more roun the hous to help! Take care x

5

its not that i am against strong meds ,its just so many people on this forum are moaning that they feel worse for being on them so whats the point. if you can tolarate the meds with out them makeing you feel worse . then thats fine,

i am lucky my kids are grown up so i dont have that problem , [mind you they still give me greif ].

i fell in the street last year and smashed my nose and broke it , never took a pain killer althou that kept asking me at hospital, i only fell because my leg gave way, without warning i suppose i was just mad and angry .at myself for going out in strong winds. but a year on i still have pain across my nose and increased headaches, so i didnt get away with it. iv got to have a tooth out and i am really dreading that because of the nerelgia i get in my face, but its got to come out i defo will be having the pain killers at the ready for afterwards , not looking forward to it at all.

6

i was not being harsh ,you have just taken it the wrong way , its when people moan about the meds making them feel worse ,but keep taking them that annoys me, if you take them and gain more bennifit then problems with them ,thats fine, good luck to you.

i just cant see the point of taking all those chemicals and feeling worse. u have been harsh on me really because all i meant is there are other ways to deal with it if the main stream dosent work

, its just another way thats worked for me , and could work for others, i used to get fatigue that made me want to rip my eyes out and pain so bad in my feet i wished i could cut them of , iv had times when the pain the ibs and bladder sentivites has driven me to destraction, so its not fair to say i havent suffered as much as others cause belive me i have .

its just iv found a differant way of coping ,that works for me . i was just trying to offer others so help if the mainstream wasnt working for them .after all if homepathic medincine is good enough for the queen and prince charles .  its good enough for anyone to try  .after all its been around since 1767 i think it was the first hospital in london which i think is still inpart .

7

ok, I see what you are saying, but can you recommend other things then that may help with the pain in the way that morphine does, and that isnt too costly? I am unable to work now so simply cannot afford to spend much on products that claim to help. If you can give us advice on what actually does work, then thats great, thank you

8

its fine we all get a bit techy, i do with my husband because he just dosent get it. like most people. if your all ready on morphine and it isent working then i souldnt think theres much you could try, and coming of morphine isent very pleasant and not advisable with out supervision. you could try .going to www.rheumatoid arthritis care .uk . and try there rheumatoid rapid relief oil , its helped me loads i get loads more sleep ,now so less brain fog in the day, if  it helps you you might then be able reduce your morphine slowly with your doctor.i have also found that a heat pad helps ease tightnes in the shoulders.dont be put of by the name of the oil ,it eases tenderness and tightness . in a number of simuliar conditions . see how you go .

9

Its just that I know others diagnosed with fibro and they are still able to work and get on with other activities as I was up until 2 years ago when I started suffering a lot with stress and I feel they think I am putting it on when I can't walk properly and have to use my stick and can't sit too long etc. Some people used to roll their eyes at me when I had to stand during meetings cos the pain was unbearable in my hips and you start to beleve everyone is tutting and thinking "oh she's off" but I have never sought any sympathy from people I work with just some understanding as from members of my family and friends, i have always tried to push myself and always end up worse now. Its got to a point where I need help getting to the loo, getting washed and dressed etc, I am hoping i won't last if I can try to get back into a positive frame of mind cos I know that helps, but right now its painful just holding this ipad in bed. I will try what you suggest though, so thank you.

10

oh sweet heart it sounds like you have done what i did in the begining ,push yourself to hard , i learnt the hard way like your self that it only makes it worse, stress will make it worse much worse , i no about being able to hold your ipad i used to love reading ,but holding a book hurts so much i rarely do it, what with my eyes going now as well.

if you can get that oil and you have a loving husband [thats not what i have unfortuntly] get him to warm the oil in his hands and gently rub it in your back neck and shoulders , and your calfs and thighs ,it feels lovely .

also people with fibro ,me,ms, tend to be low in the mineral magneisuim that might be worth a try, theres two types get the gentle one i cant remember the names but one is epsom salts based ,the other is the one you want . or if you can still get in a bath , you can buy magneisum flakes which you desolve in the bath, which is really good,

but for now sweetie rest up build up your strentgh try and move about a bit other wise u will get sorer , but dont push it, get a hypnoises cd for stress and do it twice a day if you can , this will help your recoverer

, pamper your self do what you can when you can ,and when you feel stronger, look at possiably trying some thing new. i found reflexolgy very helpful keeping me on a even keel ,didnt cure me but kept me steady, but the lady her self a sufferer had to give up and iv not been able to find anyone as good.

also sweetie i no excatly what you mean about people rolling their eyes and tutting , i get that from my old man , like you i am a real tryer and it hurts when people think your swinging the lead . you take care now and get stronger. regards tina

11

thank you. I have just looked that up on ebay and think i have found the one you mean. I will try it. I have also been reading about bio cranial therapy. If the story I have just read is true, then its looking like the thing to try. I saw somethng on facebook earlier too about something they have found n the hands that they say can be sorted out! Again though, lets see if it is true, would be great if it was. I am sorry your partner isnt very supportive. I have been with my partner for 11 months now and he will help if I ask him, but I dont like to too much as he suffers with bi-polar disorder and can be temperamental. Thanks aain for the advice x

12

dont forget to try the massage oil from _____ (link broken).the other stuff you soak in the bath with. yes i know what you mean iv tried montanna cherry juice, barley grass, eft, chiropracters, massage chairs,oxygen machine, distant healing, but i havent come across what u mentioned bio cranial therapy , shall have to look it up see if its availble at my treatment centre.thank you for mentioning it. hope u feel better soon. regards tina

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13

yes, let me know if you find anyone who practicesbit. I have been looking it up online too.

14

hi iv asked at my therapy centre in bridlington they dont do it there , but she said  she has recommened it  to people , but  it depends on the person and she wouldnt recommend it for me , i will try and find out more when i go this week, if i see her but i am having reflexology this week so its with a differant person , .

its a lovely centre i feel better just being there its wonderful and calming place and such  understanding people . they organiser a trip  every october to see an indian  ladyhealer that comes to london once a year, they say she is wonderful and shes known all over the world to presidents and royals for her charity and some time healing work,i am thinking of going ,

hope you are feeling a bit better today ,i am its a bit cooler today so not feeling so swollen ,

15

i have oonly just woken up so cant get up till my meds start to help a bit. Was woken by my daughter at 7.45 to make a doctor appt or her! She is nearly 18 but wont do it herself! My sleep is very interrupted with hip pain etc and I am sure you have the same poblem so I was so tired I dozed off again. Determined so have at least a short walk a little later. Dont care if I am slow with my stick. Jess, my dog, oesnt mind as shes getting on a bit. 

Sounds like you have a great centre to attend there! I have discovered a fibro meet up group relatively clse to me so may ring them to see if people there get some beneit from anything. I. Will look out for all the things that you have mentioned, bu will finances being very limited I have to be careful

16

sorry my spelling is dreadful. I hate this ipad keyboard, it misses letters out and I hit the wrong ones all the time too! Thanks for your advice I will be checking all these out. Hope your day goes well x

17

oh dont worry i have a terriable time texting on my phone, have to use one of those touch sticks .

the oxygen drops are £17 .69 which will last at least a month the oil is about

£30 which if your just using in say your hips and back will last a good while.

i know what you mean about teenagers ,my daughter is 27 and has split with her fella and moved into a hostle , and dumped her dog on me he is a lovely little chap but his so lively his border terrier , and we have our own patterdale terrier who like us is knocking on , and is very quite calm house dog, we have had her dog now for about 8 weeks she hasnt said thanks once. selfish the lot of them. unles there unwell .

iv just got a copy of the magazine what doctors dont tell you, it used to be only on line, its now avaiable in good newsagents , it gives a balanced approch to medical conditions, and medicine , and always gives you the source and paragraph and page number so you can check it out your self . its very informative . and balenced.

18

yes they are very selfish, my son is 20 now uses allhis uni grant on tattoos and takeaways then comes to me for money or a music festival! I told him its just too bad I dont have it any more things ar very different now I cant work! He just doesnt see it! I have spoilt them I guess, somy own fault but they dont see that i just can do it ianymore! Ilove dogs and cats and willmiss mine terribly when she goes, she makes me smile when Ijust feellke whinging

19

thats ok sweetie nothing wrong with a good whinge my 23 yr old son like me has aspergers syndrome as well and is a real pain in the arse he left special needs school at 16 and sat on the sofa ever since to be fare he has had very little help from s/s , i no from suffering at a time when it was even less understood how hard it is once again like fibro it cant be seen .

 your iq  is usaly higher than average so people just dont get it that your brain is wired differantly,

i am so luckynot!

, bullied at school ,teachers telling me i am lazy, then in my 20s i devoloped chronic aneima which required weekly iron injections,oh the pain!

 then just as i thought things couldnt get any worse along comes fibro ,oh what joy, there iv had my whinge now.

thank god iv got a sense of humour, yes i love animals speacialy dogs and horses. there never ask more than your love , and care

, unlike kids who take all the time and just dont give back .

i think its this. everything now generation, because i would have done anything for my grandparents to help i miss them still and they have been dead a long time .

i lost my dad 4yrs ago and miss him to althou not the best of fathers , we had just made it up when he devolped cancer . my mum i cant stand selfish and cold , but i did try very hard but she left me at 12 and forgot about me so i never felt anything for her.

but like you i done the best for my kids, never went out for 14yrs because i wouldnt leave them with babysitter, i kept a clean house and plenty of food ,they always came first ,but when you need some support they just dont give a s**t. they seem to care more if its one of their friends mums.then their own mum.

20

gosh you have had a really bad time of things! I guess what doesn't kill you makes you stronger and thats why you are able to just about cope with all that has been thrown at you! Its good you have the centre to go to, it will do you so much good and help you relax. My kids used to help when they were younger. Before I bought my bungalow 7 years ago we were in a house and when I couldnt get down the stairs they would each bring things up so that I could make them a sandwich etc and they would get either side of me and tell me to lean on them to help me walk. They were really good about my illness. Now though I think they resent me cos I cant keep the house clean and tidy and cant cook as often as I used to. I used to cook every night from scratch so they just wont eat anything from the freezer or convenient foods most of the time if I ask them to get me a drink they pretend they havent heard me! I wonder how they became so selfish?! I know they both have problems too, my daughter has a thyroid disease and my son has to take betablockers but they are still very capable of doing dishes and cookg and. Walking to the shops - they just won't! I was the same with my kids, never went out! I remember about 3 years ago I got dressed up to go out. My daughter says "are you going out?" so I said "yeah I am going to the pictures" . She says "what? Without us? "! Lol