Anyone else living with Fibromyalgia

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 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)))

Amitryptyline works brilliant for me but find it really hard to get up in the mornings on it xx getting my vitamin d levels checked also dealing with thyroid problems at the minute, I'm all over the bloody place, the joys of getting older x