after 10 years being told it's nothing but at same time putting me on tramadol for what I was saying so contradicting there selfs , then couple years ago telling me it was restless leg syndrome,today was a big relive to finally get the answer I knew all along by a great Dr who gave me one important thing his time and he listened today at the hospital I'm being referred to physiotherapy for help also to go in hydra pool and also acupuncture just wish it was sooner at times you just feel so alone .
Well done to you for going through it all to finally get to a diagnosis, and I hope you feel a bit better soon with the therapy you are going to receive. I hear that the hydra pool can be good.
Hello Dean, Never any need to feel alone here, lots of advice and kind words of support available, I would really be interested to know how the acupuncture and hydro pool go, Gentle hug to you.
Thanks for responding to my post , it's been hard as I love my job but at times just carny get out the door , one thing I find that ease my symptoms at time is heat , a very hot bath even if it's 3. In the morning I'm awake anyway helps , so that's why they advised the pool I've read up about the acupuncture and I've read a lot of good things so will keep you all informed and its on the nhs I've also been told they are going to give me a machine to help I'll get you name soon . Thanks take care
Hi thank you for taking the time to respond it's good to know your not alone even thou my wife is great and has been there she just doesn't no the pain and how bad it feels of course I'll let you know as soon as I've had the treatment the acupuncture is meant to be very good for fibromyalgia take care .
Hi Dean, so pleased your being taken seriously, I've had a few weeks of hydrotherapy and found it fantastic, it did make my wrists really hurt at first but when everything hurts like us we tend not to use our joints in a different manner and tend to stay in our comfort zone,
I'm about to start another couple of weeks soon and can't wait,
I'd recommend it to every fibro sufferer,
Keep us informed on how you get on.
Hi Dean so pleased for you that you finaly got a diagnoses. it took me 10 years to get diagnosed.You wount feel alone on here we are here to help support each other through it. Your gp will try you pain killers some will work others may not your gp can also refer you to apain clinic. thats where they help you with the pain. I tried accupunture it didnt work for me but we are all different what works for 1 person may not for another person. you will find its trial error on alot of things with fibro its finding what helps you what doesnt. get as much help support as you can. and also some aids to help you eg walking stick walking frame anything that will help you in your daily life.you have joined the fibro family so you will never feela lone we are all here to help support each other. take care gentle hug
Hi Leona
thanks for taking the time to read and reply to my post , the hydra pool I hope and believe will help I've read up on the acupuncture they have offered and all the notes I've read up on is all positive and is meant to be a get relive for fibromyalgia I will keep you informed take care .
Evening Kaz
thanks for taking time to talk , I saw the pain clinic two years ago even thou my dr didn't thing I had anything in particular so he contradicted hisself by sending me there when there they said I had restless leg syndrome and put me on lidocaine patch and gababentin which didn't touch me , I've been on mst tablets for about 6 months and also oramorph which today the rymatolagy Dr wasn't happy I was on so has put me on new mess so will see the main thing I find helps me is heat ie a really hot bath I have a bed with built in massarge and heat pad , I'll let you know how my treatment goes take care of yourself thanks again .
Yes, if hot baths help it seems the pool might work. I'm surprised you got those treatments on nhs, I haven't been offered anything other than antidepressants. I live in Wales so should be the same. Anyway, enjoy your evening.
your not alone my friend i to have had it for years its horrible just thought i would drop you a message to find out what its like for you as from a mans point of view its very hard for me to deal with just woundering how your coping with it
Hi Derek
thanks for the message tbh at times it's hard very hard I've been put on antidepressants a few times as my dr sees me struggling, my wife helps a lot but it's hard at times to explain to her how bad I'm feeling at times crying today has been a long time coming over 10 years struggling with no diagnosis until today the hydra pool I'm looking forward too has heat is the one thing that does help me my wife can run me a bath at 3 in the morning if I'm really bad and it does help at the minute I'm on 60mg mst and oramorph I worry being on them as I'm only 34 so worry how going forward with men's is going to be its good to know their is other men out there as it seems women is the main affected take care Derek .
Hi Dean, Welcome! Some Epsom salts on your baths might be of help. I'm on LDN (Low Dose Naltrexone)... still experimenting. If it's something you'd like to consider we can talk. Diet and foods to avoid are a must too. Take care. T.
Its a real celebration to finally get that correct diagnoses isn't it? Bless you a Dean...we all have usually had this Fibro fir years befire finally a diagnosis...we finally feel validated, many of us have been told it's all in the head...mm...I winder why.,we get depressed knowing so etching is wrong anfpd having doctors say it's just thus ir that...treating the many Symtoms seperately.no wonder we have such anxiety too..well done you Dean...now you can have treatment that will help....do remember that stressless is the key to living with Fibro..all those things you are going to do now, that the hospital doctor recommended are really beneficial too..have a lovely day be blessed..:-) xxx. I think that's really good too. that we all must be good at LISTENING and slow to speak or make any judgement...
Hi Dean it took me 10 years to get a diagnosis as well I was told and treated for ibs I have chrons/colitis as well as fibro....I did a course of 12 weeks in a hydro pool it felt so nice being in the warm water you do light movements to help build your muscles up there were other people with ankylosing spondylitis who could hardly walk and bend it made me feel I was one of the luckier ones and was enough to spur me on to want to do more for myself...from there I was able to go on another course of 12 weeks under supervision in a gym to strengthen arms and legs with low impact Aqua aerobics and swimming ask see if this is available in your area you are very young and would feel the benefits I did... good luck
shirl
Hi dean. I was diagnosed about 8 weeks ago. I felt elated when if finally found out what was troubling me then I went through what I can only describe as a grieving for my old life but with the help of these guys on this forum I'm slowly coming out of that and embracing what my new life will bring such as a healthier diet, a calm mind and more time to enjoy my crafting.
Good morning Dean,
I paid for acupuncture myself I went every fortnight for a year I loved it I felt very little pain in my joints or muscles and felt more energised generally, but unfortunately I couldn't keep up the expense,
Apparently I can have acupuncture here in my local hospital where I have hydrotherapy so I'm going to ask about it,
Diet for me makes a huge difference to my daily living
Ive given up gluten and only eat fresh home made food it's more expensive but worth every penny now I understand the benefits of how it makes me feel,
I also take magnesium every day I find this a big help to although there are no medical evidence that magnesium helps fibro it's trial and error, on a really bad day I use magnesium spray oil on my joints this really works for me and it's not another chemical tablet into my body with other side effects,
Hope you have some ideas on here that helps you,
I've hade fibro for ever I think 😏 well over 16 years and SLE for over 20 years and I'm still learning
But I find keeping active even on my worse days help me recover from flare ups quicker than going to my bed even if it means dragging myself to work I still go I function on auto pilot most days and have learned to laugh at myself for the stupid things I do and say, it can be embarrassing especially I'm the middle of a ward round with consultants, I just say o well it's my fibro fog day and we all laugh together
It gives me a sense of achievement after I've done something when I really feel I can't
We are all different and I know I have a very strong mind
But I hope you find a way to start living a good life with fibro, Fibro is not your life,
Have a good positive day.
Leona.
I forgot to say I totally agree with Shirl too...on the hydrotherapy...I do.it regularly sometimes only once a week......just do what they taught me at
the hospital...I do it in the local Resorts warm swimming pool, I had to join their health club-(gym) but I have access all the time..I sometimes only can slowly walk up and down but it has great effects...:-) xxx
Hi deborah I found it a relif when you finally get a diagnoses and know that its not in your head. you will et support and advice on the forum should you need advice. we are all in the same boat so we know how each other is feeling and what were all going through. It is hard at first coming to terms with how we are now and sometimes you can grieve for the old you. all we can do is take a day at a time and do what we can to make our lives more bearable. take care gentle hug
Hi shirl
thank you for your advice it is most welcomed I will look into what is available I believe the hydra pool will be great help , and aqua aerobics as well , will let you no how I get on take care .