My gp has been trying to manage my care and been to pain management. I feel so fed up and struggle as sensitive to meds but feel I want to referred to either speciality. I am having terrible flares with left leg going from me / groin in agony, then can hardly walk
What would be best?
Rhummy they are more diverse and if you need neuro they ll sign post you. Its not easy when your sensetive to meds im a paracetamol girl and as few as i can manage as i react to most other meds but its cool cos paracetamol still take the edge off bad days n my body is so used to pain that if i was ever pain free i d be checking i still had a pulse lol, good luck with what you decide you could ask your gp for both see what he/she offers xx. Love n warm gentle hugs xxxxx
My vote is for rheumatologist. Been to a neurologist before for one of my diseases and was going to send me to a psychologist .rheumatologist disagreed and diagnosed me correct
A tight muscle applying pressure to a nerve will not be cured by either talking therapy or medication. You need to see what a hands on specialist like chiropractor, Alexander teacher or other hands on therapist can offer.
anyone recommend physio, chiro or cranial massage for head pain.
This is not an easy to answer. What is causing the head pain? You may need to see more than one specialist. This may include seeing an optician. Eye problems can cause head pain.
The head not balanced on top of the spine can cause head pain. Pressure inside the skull can cause head pain.
One needs a bit more information before any recommendation can be made.
Wish I knew. 30 yrs ago told I had spondylosis. Only thing that helped was traction. Relief didn't last long. Was on 8 cocodamol a day as still working full time. Deteriorated, had to finish work. Tried acupuncture, hypnotherapy. No joy. Looking back things were a lot better than now, but at the time thought they were bad. Eventually, 10 years ago paid to see rheumatologist who thought polymyalgia. Had x- rays, degeneration of spine, twisted top and bottom, also osteopanea. Had steroids for over a year, still no improvement. Then told, not polymyalgia after all, but fibromyalgia. Attended chiro for another 12 months. No lasting improvement, in fact getting worse. Now 10 years down line, having exhausted multi medications, with no benefits, but feeling worse thro side effects, I have mostly ditched them . I now just take 2 paracetamol at night. plus levothyroxine for under active thyroid. Have had 2 horrendous years, having had two bad falls myself , and my DH, diagnosed dementia, also had several falls, including a broken foot with numerous hospital, doc, physio visits, all, after his unsuccessful knee replacemen,. He is now virtually immobile. I have been totally stressed out. Have also tried mindefulness with limited benefit. I have constant left sided head, neck and shoulder pain. In desperation, recently asked doc for referral for head/neck scans, as I have never had one, but she doesn't think it necessary. Asked to be referred back to try physio, one again, but now, three weeks later, have heard nothing. Takes 3 weeks for doc appt. so looks like having to go back again. Really could do with some help so also asked doc to refer me to a social worker - picked up a leaflet which said to do it thro your doc. Still also waiting to hear about that as well. Feels like being on a nightmare treadmill that I can't get off. Oh well, on the plus side, at the moment managing four/five hours sleep so that is an improvement, and still managing to function on a daily basis by pacing. I still look fit and healthy, most of the time, when I manage to get out of the house, so no-one, other than my husband, is aware how bad things are when I get home and crash. Or how many hours I spend on the sofa with my hot water bottle, (my best friend), or how often I have a weep when I go to bed. Anyway time to put on the smile and get on with the day. at least the sun is shining. Thanks to you all on this site for just being there.
Thanks for the reply. I know where you are coming from. I think.
Each person's experience of your nightmare is different. To start to move from the nightmare there is a need to engage the brain to step into the unknown.
Mindfulness as taught on many websites attempt to give a rosy picture of a method of getting better. Unfortunately, true mindfulness is very different. Mindfulness is not about feeling better, Mindfulness is about experiencing yourself as you are now. If things are not right mindfulness can leave you feeling like shit. The religious traditions particularly Buddhism know about this and have developed methods to get you past the feeling like shit experience.
You need the help of experienced practitioners when practising mindfulness. Experienced practitioners exist in the Buddhist tradition. They exist in other religious traditions.
You say: "Then told, not polymyalgia after all, but fibromyalgia. Attended chiro for another 12 months. No lasting improvement, in fact getting worse."
The human body is an engineering system. The brain controls how muscles work. You are familiar with computers and software. The brain is a computer which runs computer programs. The brain can modify the computer program to do something different. If there is a bug in the brain's computer program you can get all sorts of ill effect. This is fibromyalgia. You see the chiropractor who modifies something that is incorrect. You leave the chiropractor and within a short while the brain's computer program puts all the problems back again.
You can see the rheumotologist and neurologist and physiotherapist who are looking for something work with the body. They cannot help because there is nothing wrong with the body as such. You have a faulty computer program running which is causing you grief.
The religious traditions have been working with this problem for thousands of years with successes and failures. The medical profession ignores the brain's computer program issue.
Pain killers cannot correct a faulty computer program. Physiotherapy cannot correct a faulty computer program. Drugs cannot correct a faulty computer program. What can correct a faulty computer program? You can. It involves work exploring yourself and taking the courage to step into the unknown.
I will stop at this point to let you digest what I have said. Reply to this and I will continue with this further.
Note: No one therapy is effective. You will need a number of different approaches working in parallel in order to move forward.
Hi my symptoms are similar to yours. I can’t hardly move either. If my knee isn’t giving way it’s hip and groin on opposite leg. I take Zapain which helps a bit and Tramadol if I feel I really need to. But this doesn’t cure the problem. The pain comes from nowhere. My gp doesn’t seem to realise the affect this as on my every day life. And says I just have to put up with it.
Yes Im beginning to think that going to the Doctors lately is a bloody waste of time. They've taken me off Zapain and put me on PARACETAMOL. They're no good for me, not strong enough.
I'm on a 5 mg Butrans patch. I change it once every 7 days .Am also on 250 mg Pregablin per day. I have been on the same medication for 7 years.
They just don't know how to treat Fibromyalgia.
In the meantime we have to just grin and bear it . About time it was iooked into properly, the same way as ALZHEIMER'S , DIMENSIOUR, CYSTIC FIBROSIS etc.
They are all such terrible Diseases.
BUT SO IS FIBROMYALGIA, IT'S SUCH A VERY PAINFUL CONDITION THAT RUINS OUR LIVES .
Just so fed up. Don't know what to try next
Ive done Mindfulness and Cognitive Therapy but it doesn't help ..
How can that help when you are in so much pain that you can't stand, walk eat or sleep Then they expect you to be able to take your mind off things.
How the Hell can you .
It's just a Nightmare.
Can anyone out there suggest anything else that i could try. Just to help ease the pains.. THANKS TO EVERYONE FOR LISTENING 😱😰😭
Thank you all for your advice and support
Rheumatologist for sure. But I also think you should check out a chiropractor too. They can see if you’re out of alignment and adjust and ask for exercises. Sometimes your pain might actually be coming from your hips. I had hip surgery I know or your hamstrings are too tight pulling you out of alignment. If you have a foam roller I’d roll on one and try to loosen your Tfl and hip flexor stretches. And core exercises. I have chronic issues with my psoas they can do that too especially in stress I’ve had it chronically since hip surgery. Look at doing some of the things I mentioned google it up. I’d for sure see Chiro get the low down so you know what areas to work on & they’ll have an idea if you need a doctor. I’d try Chiro before physio
Recently Diagnosed at 24 
has anyone been able to permanently manage their illness without relapses?
Functioning - only just!
Good evening everyone,just wanted to share with you all
Who manages your Fibro?
