Is anyone else living with fibro please? Iv had constant pain for months in different parts of my body with no explanation, I have had a full blood count which came back normal with slight borderline thyroid, my doctor has diagnosed me with fibromyalgia. Lately iv been having upper back pain as though someone has their knuckles pressed into my back constantly which knocks me sick, also pins and needles in my arms and fingers, and tonight the ache radiated into my ribs, has anyone else experienced this? What treatment is there for fibro? I'm not sure I can live like this. I'm due to see my doctor next week. X
Hello Donna,
I think we are all living with fibro on this site. It is a horrible condition, but there are lots of people dealing with it, and living the best life they can! People have such different experiences with this, it seems that 'no size fits all' My personal experience, and I was only diagnosed in July 2013, by a rheumatologist, is that Im take 50mg Amitriptylene every night, helps with sleep not so much pain. Doc won't prescribe any painkillers, because they have horrible side effects. Do'nt fall into the trap of having loads of painkillers, and still be in pain is probably the best advice I can give you!
Hang on in there, you will learn to live with it, but it won't be easy. Good luck
Anne
Hi Donna I agree it is a miserable affliction... I was diagnosed early this year by a rheumatologist... I had been in near constant pain, depressed, and totally, totally exhausted all the time...
The specialist was very good, however I was already on the treatment he would have given me ( for a different long term spinal problem ) and that was .... antidepressants.. ( sertraline and amitriptyline )
And ( pregabalin ) for pain relief and gad... I have suffered from depression for many years.... it is a distressing condition as you look well, it is presumed that you are just being lazy.. I found one of the worst aspects is. The total exhaustion and lack of interest in anything that I used to enjoy..I do have some good days which are a bonus.. but the really bad ones are absolutely dreadful... I do so wish you well, try to keep positive and let others know that you have a problem, so that they can make allowances for you... Take care, kind regards Deirdre x
How do you deal with pain without painkillers.? Iv been using heat patches and hot water bottles, which help a little not many pain killers touch the pain really. I have anxiety too which probably makes it worse, I never thought fibro was so painful and always thought it was something else! But the doctor seems adamant its that. Just cant take it in that fibro can cause so much pain. X
Hi Donna I agree it is a miserable affliction... I was diagnosed early this year by a rheumatologist... I had been in near constant pain, depressed, and totally, totally exhausted all the time...
The specialist was very good, however I was already on the treatment he would have given me ( for a different long term spinal problem ) and that was .... antidepressants.. ( sertraline and amitriptyline )
And ( pregabalin ) for pain relief and gad... I have suffered from depression for many years.... it is a distressing condition as you look well, it is presumed that you are just being lazy.. I found one of the worst aspects is. The total exhaustion and lack of interest in anything that I used to enjoy..I do have some good days which are a bonus.. but the really bad ones are absolutely dreadful... I do so wish you well, try to keep positive and let others know that you have a problem, so that they can make allowances for you... Take care, kind regards Deirdre x
Hi Donna,
as Anne said we are all in the same boat. I was put on steroids but have slowly come off them the side effects are horrible. I take Ibrufen or Forte takes the edge OEG and use hot packs. I see there is research into marijana oil that might help.
I make myself take my dog out every day and stay as active as possible other wise life would not be worth living.
All the best stay on the site you might get even more good tips to help you.
Can be depressing don't let it beat you.
Cheers. Rosie
Thanks Deirdre I totally get where your coming from it sort of feels like a lazy illness but its not, I have been active all my life and I'm only 34, its distressing that I havnt got any energy to do the things I used to. So wish there was a tonic or something out there that will boost energy. X
Hi Donna,
Not sure what part of the country you are in but there is a 16 day pain management course that is held at Liverpools Walton Centre which I am waiting to get on so I am sure that it is available in other areas.
I am told it is a great help as it guides you in how to keep control of your pain and how to understand the best way of organising your days.
I have gone from cycling over 100 miles per week to struggling to climb the stairs and the only thing that is keeping me going is my family so I am hoping that the course will guide me out of this black hole and get me back to some kind of normality, ask your doctor about the course and see if he thinks it is right for you
Feeling for you Donna,,like Anne, I also use Amitriptylene at night..having a good nights sleep, certainly helps you deal with whatever Fibro throws at you the next day...This medication was originally used for depression a long time ago..then they found out it numbs the pain at the nerve ends stopping the pain from jumping onto the next nerve..great results...but people are all so different and probably have other medical issues too, so you have to get the right meds and dosage that suits you...it took me a couple years to get on the right dosage of Amitriptylene, now I take nothing else only over the counter..vitamins,-calcium, vit d, .glucosamine...etc..when the pain gets really bad I use lots of hot water bottles, hydrotherapy in your local or home pool is excellent, I have a sauna with infrared at home that really helps too...unfortunately we sometimes have to educate some doctors on the Fibro issue, so researching on google is a good way..I did it years ago and my doctor started to get really informed himself...remember your not alone. Even though there is no real cure..you can manage it in time..I've heard of oeople who got cured from it, they went on a Paleo Autoimune Protocol eating regime they never call them diets ....???? Never tried it myself.,although I am on a Pakeo eating regime and have been for 2 years now...it's great ..try googling it...high protein low carbs..no bread, no pasta, no rice or grains, but there is sooo much more great food to substitute out there..like cauliflower rive raw cauliflower bkended to look like rice then add in what you like and just pop yip ti to the microwave..there are heaps of Paleo sites out there..I just love eggs and bacon etc for brekki....got used to no bread.,also IT. IS IMPOSSIBLE THE EATING OF FAT CAN MAKE YOU FAT..It's usually the sugar...(which is not on Pakeo Regime) have a wonderful 2015..Australia
Hello Donna
All of us on this site have unfortunatly got Fibromyalgia. I take Paracetamol and Oramorph, it just takes the edge off. I do a little, and leave alot. I also take myself for a short stroll just to keep mobile really or if sitting around for too long I seize up. Happy New Year...Anne..
Hi Anne,
I take paracetamol, tramadol, pregablin and amatriptylene.
It doesn't work for me so I was thinking of asking to replace the tramadol with oramorph.
Have you been on the same sort of pain relief as me and ended up changing to your current meds.
All the best to everyone for a great new year.
I take the amytriptiline, but I take it at 8.30 at night before bed..it gives me a good sleep..then I can handle whatever the Fibro throws at me the next day...
Hi Donna
Try to find a support group near you. I live in Northern Ireland and found it hard to find a group near me but my Doc has told me that one has started in Belfast so i am going to go to it.
Soft hugs & xx
Sandra
Hi Graham..
Sorry for the delay in replying, but you know how it is. Today my body feels really sore and throbbing, and the soreness in both feet is crazy.I am really struggling today. Anyway back to meds,I have been on all the meds you are currently on and did not find them any good. Pregabalin, that worked for the first 6 months but after that, no. The side effects were terrable.I asked Dr to take me off them he said NO so I weaned myself off them slowly. I feel better not having them, and lost 12lb too. I have been on Oramorph now for 2 years, it takes the edge off and when I go out I always take it with me, so I can have a swig out of the bottle when needed..Its all I take now, the kind Dr I have will not give me anything else as I have tried most drugs, that do nothing......Happy New Year...Anne...
Hi Anne,
I wish my Dr's would let me try Oramorph as it was the only thing that helped me to get to sleep at night.
All this stuff isn't really helping me much so I am hoping that the pain management course will address the meds.
Sporting Regards
Graham
Hi Donna
Anne is wright it is useless trying to treat fibro with pain medication. It may have small short term effects but in the long run you will have just as much pain as well as an addiction.
I have had fibro for most of my life but it was not diagnosed until about 5 years ago.
There is a number of technics for dealing with pain without medication. The most effective that I have found is diversion therapy it sounds very simple but it does take a lot of practice to master.
The bases of this concept is that every bodies brain including those fantastic at multi-tasking can only think of one thing at once. You are only able to feel pain if the brain is acknowledging it.
Most people when they experience pain focus on it for example if their arm hurts they may rub it or discuss it with a loved one this in turn makes it feel worse.
It is possible to force yourself to ignore the pain if you focus on something else. The pain can be persistent in trying to get your brains attention, you need to be just as persistent that you are not going to acknowledge it.
There is an endless variety of things you can do to divert your mind. When I need to divert my thinking for long periods of time I play games on the computer such as mine sweeper, Sudoku, jig saws etc. I try to play time based games when the pain is being a little persistent and more relaxing games when its not.
This works even for severe pain. I recently had open heart surgery where they cracked open my chest. All the other patients where on very strong pain killers and I would only allow them to give me two Panadol. I belief I was in less pain then they were and I was up and walking around the ward much sooner than they were.
I hope you try this and find it helpful the more you practice the easier it becomes.
Kind regards,
Gloria
Totally agree with Anne, I also take amitripyline, doc would give me painkillers if I wanted but don't want to take any painkillers...they have to be increased all the time...BAD..they are nearly always addictive...you will learn what you can and can't do Donna be blessed..:-) xx
Hi Donna,
I came on to find some advice on my fibro meds and stumbled across your post, so wanted to say hi.
I was diagnosed with Fibromyalgia a year ago but I have a number of other chronic problems that seem to trigger pain in various parts of my body, so its took a long time to know which pain was which and how to treat it.
Everyone you meet will have a different story about how they came to be part of the fibro fighter club so don't worry if you're symptoms are different or no one really has a definitive answer just know you are not alone. :-)
Treatment will vary depending on your GP and if you are referred to Rheumatology or Pain clinics.
Because I have spine and joint pain due to other conditions I was on Tramadol and Co-Codamol for a long time before I eventually got into see the right people to diagnose Fibro.
Like you I was suffering with finger and wrist problems and horrible pain in my toes and heels, shoulder blades and ribs.
Pain meds didn't even touch some of this pain and it took a rheumatology department to start the ball rolling on what to do next.
There are a number of medications - I was started on amitryptaline (sorry if misspelt) but I reacted badly to it, which was a shame because years ago it worked well at getting my knee back to normal following nerve damage after surgery. I'm sure there is another similar med they can try you on at this stage but I can't remember it's name, I can't take that either!
Then following a massive waiting time for the pain clinic I was started on something called Gabapentin. Unfortunately this is why I've come on here I had a severe allergic reaction to it & I'm waiting to see immunologists to figure me out. So its left me with no pain management other than co-codamol to rely on.
There is also Pregabalin but this is expensive and most UK NHS trusts steer clear unless you have no choice.
This is why I'm being checked first, it's 3 times as expensive so a waste if I react badly to it.
Everyone has different experiences of the meds and certainly in the early days of all them I have found functioning a little difficult but they do subside for most.
Make sure to ask your GP to refer you to the hospital as this is where I have found the most support. I started a support group this week to help meet others and learn more so I can always keep you posted if you like.
Stay strong hun xxx
hi Donna,
I was diagnosed 6 years ago and I have tried just about everything. It really is trial and error. You absolutely can take pain meds as there are some that really do help, depending on the individual. Just because a drug is labeles as "addictive" it does not mean that everyone will become addicted. Only some people are predisposed to addiction due to their brain chemistry. I am not one of them. I can take or leave anything, I just go by what seems to work for the pain. I had tried percoset a while back and it worked ok for about 8 months, then it didn't work as well so I just stopped taking it. Now I take Ultram extended release and Buttans patches. I stop taking them for 2 weeks every 4-6 months so that I do not build up tolerance and it keeps me very functional. Of course, exercise, yoga, tens units, heat, ice, magnesium malate, binaural beats, hypnosis, and 5-htp all help too, as well as staying away from certain food triggers like MSG. Don't be afraid to try meds for pain though, they can help a lot, and are not always going to make you an instant addict. Pain meds, taken responsibly, can greatly improve your quality of life! (((Hugs))) 
Sorry-typo there. I meant Butrans patch.