Hello everyone

I am new to this site and whilst the existing threads are great for info it would be good to have feedback on my own issues.

I have two things going on at the moment that are causing me grief. I was diagnosed with fibromyalgia about 4 years ago now after I had all the signs and symptoms (much like my grandma and mum, even though they say its not hereditary)...anyway I am taking Effexor 75mg/day for the fibro pain which seems to keep it at a reasonable level, and I also take SAMe tablets which are a non-prescription tablet and they have been really good at keeping my aches under control. I am currently going through a big flare up and I am not sleeping well and popping myself full of various pills but nothing seems to work at the moment. I have also had 3 back operations in the past 3 years and whilst they have been successful to a point I am still taking heavy medication to relieve the pain. I am on Fentynal patches 50mcg/hour and have Endone, Panadeine Forte, Tramal, Valium and more for break through pain.

I guess there is no real point to my thread as everyone here is obviously in the same boat in one way or another, but if there is anyone who has similar to me it would be good to hear what you do for pain relief and other therapies that may help. The pain specialist found that my facet joint around L5/S1 was causing most of my pain so I had the radio-frequency nuerotomy done for the first time about 3 months ago, but I think its wearing off already. Does anyone know how many times you can get this done and whether subsequent treatments may help or make it worse? I am thinking about going to a physiotherapist to see if they can help because I get intense pain around my facet joint and at night I wake up in so much pain around my thighs/pelvin region and have no idea if that is connect or not

Welcome to Neuro Talk. So sorry you are experincing all that. I do not know where you live, but I would recommend a different kind of doctor to you, called a physiatrist. They speciailze in pain, but treat at a cellular level. It would be worth your time to investigate. Sometimes a different branch of medicine can really help get things under control. I hope better resolution can be found for you. There is help and support here, and a caring group of people. ginnie

I agree with Ginnie. I have had Fibro for 36 years and spinal problems for around 30. My pain has been managed by a physiatrist for the last 13 years. Over the years, I have had three pain docs and he is my pick of the litter. Each change has been due to a geographic move......no doctor hopping.

Fibro is something you have to learn to live with. By that, I mean you must determine the things that aggravate it and try to avoid them. Determine the things that reduces it and do it. I must avoid stress , erradic weather (can't do that ) and non Fibro pain. That is impossible with a spine that is shot. The Fibro goes wild when my body thinks it has been violated in some way. This means I must avoid unneccessary surgery and procedures. The last spinal surgery was a wicked one and threw me into a horrible six month flair. Something as simple as trigger point injections cause a flair. My body totally over reacts to minor pain. Just having blood drawn causes problems for me. I avoid what I can and tollerate what I can't. Things that help are moist heat, hot soaks, pool therapy and aerobic walking with a rollator back before I developed serious mobility problems. Getting those endorphins pumping was very helpful. The right meds vary from person to person. It's trial and error.

With this in mind, it will take a great doctor time to sort out your problems and come up with an effective treatment plan. Try to be patient. Easier said than done, eh? The stress from allowing yourself to get all worked up only aggravates everything. I have learned self hypnosis and that helps me relax and sleep better when I am in a flair. Plenty of rest, preferably sleep, helps.

Fibro not with standing, I would avoid spinal surgery unless you are dealing with spinal instability or a nerve compression. Surgery seldom reduces pain and often increases it. I have had six surgeries. Two reduced the pain as they were decompressions of very battered and angry nerves. Best wishes.

I am sorry to hear about your pain, and I too have fibromyalgia. I agree with Ginnie in seeing a physiatrist. It may take a bit, but you will find what works for you to make things tolerable... hang in there.

Your primary doc should be able to make a referral for you and have a good idea which local physiatrist would be a good "fit" for you. Best wishes.

EMQ Chick,
I can't help you on the fibro, but am familiar with back pain. I don't know if this would be helpful or just cause more problems because of the fibro. Have you heard of peripheral nerve stimulators? They are generally for the back, but I have one for my migraines.

If you haven't heard of them, here is what they are. A small battey is implanted under the skin with single or multple leads coming off it. The leads are placed close to the nerves that are painful. A hand held unit lets you program the leads to emitt very low voltage electricity. You control the level of stimulation that is comfortable, and generally a technician puts several programs into the hand held remote control so you can choose where you want the stimulation to what ever area hurts. It dosen't feel like an electric shock, more like pressure. For instance, there might be a place in your back that you push on for temporary relief. The stimulator would put the same sort of pressure on that area.

Alone, mine, which has leads surrounding my right eye, cannot control my migraines, but in conjunction with my medications, it often takes the pain away longer than meds alone. It is an outpatient procedure. I don't know if it would trigger a flare with fibro, but its worth looking into.

Sam

That's an awful lot of drugs that you are taking. I have no idea about what you should and shouldn't be taking, but bear in mind that drugs are tested individually, so that what they do when combined with others is not known.
I heard someone say that the only difference between a drug and poison is the dose.

You can also be susceptible to rebound pain, when the drug itself causes the pains it is meant to stop. You become dependent on increasing doses and if you leave it too long you start to get withdrawals and the pain.
Quite subtle and you might find it hard to believe as the pain is real.
Might be time to get your medications all reviewed as they don't seem to be helping much. BUT... do any changes under medical guidance, as withdrawals can be nasty.

Seeing a physio is a good idea. While drugs only mask the problem and never cure, a physio is quite likely to be able to get to the root cause and get on the path to fixing it.

I use physio, chiro and massage. They all have a role to play.
My drug usage is now quite moderate, being primarily slow release paracetamol, topped up with tramadol as needed.

I also take magnesium chloride for my muscles.
Massage may help you sleep once the muscles knots are eased away. Works wonders for me. You'd be surprised at how much tension your muscles hold when you are in pain and not sleeping.

Good to see you are looking for alternative treatments. May take a while, but keep at it. Ask lots of questions and do research.

I wouldn't put a lot of faith in a fibro diagnosis either. Look for the real issues.