New member seeking advice!

[SweepSooty]

Hi I am new to the community. I was diagnosed with fibromyalgia back in 2011 and at the time was told by my GP to'just forget about it!'. So of my own back I joined an arthritis self help group where we do physio in the pool and get together for social events. Despite all this the pain has just got worse and just recently my rheumatologist told me that I need better pain management and to see my GP( a different one). I have always been unsure about taking strong tablets because of side effects and don't really know what road to go down. As well as fibromyalgia I also have epilepsy, osteoarthritis, immune deficiency, bronchitis, migraines and an essential tremor so I am already on enough tablets. Any advice would be welcome. Thanks

[heathkir1]

I find magnesium supplements really help me. I am also on amitriptyline 50mg which works well. ❤️

[johnsmith]

The tablets you are taking may be causing the problems. The physio in the pool may be causing problems. This needs closer examination.

Pain killers kill pain. The body relies on pain and discomfort messages to prevent itself from damage. The tablets being taken quietens pain and discomfort messages with the result damage is being caused which eventually result in the need for stronger pain killers.

Some pain killers will cause muscles to tighten which then results in difficulty with movement stresses being applied to structures which do not like stresses being applied to them.

Muscles have nerves which cause them to contract. They are no nerves which cause a muscle to uncontract. The muscle relies on the springiness of the fascia and ligament and other muscles to uncontract them. No drug will uncontract a muscle. Sometimes a muscle can become over contracted. When this happens the muscle needs to be manually uncontracted. This is why massage therapists and chiropractors are able to remove many painful and uncomfortable conditions in their patients. The medical profession often do not understand this issue of over contracted muscles requiring manual work done on them.

When you do a movement how do you it? Do you work on ensuring that the joints can freely move or do you do a movement with the joints locked? One movement will stress things that do not like to be stressed. The other will help a movement freely move.

To being to study movement and notice the various ways of moving requires the use of mindfulness. Mindfulness can be uncomfortable if everything hurts. Meditation is useful in that it can help quieten the mind so that mindfulness can be more observant.

[Al10]

My experience is pain relief is OK for short lived acute pain. Chronic pain is another thing entirely. I'm not a fan of long term pain relief. I want to look for what is triggering the pain how to reduce the pain the body is producing. Pain Medication is not designed for long term use. Most, is damaging long term and our bodies adapt and just scream louder for attention.

Surprisingly there are things you can do to reduce pain but often it needs someone to understand what is triggering the pain. Doctors are too often clueless in this, preferring to label it (fibro?) and maybe medicate it.

I rang for an appt for my painful feet. More Fibro? Plantar Fasciitis? The GP phoned back and decided over the phone, it was metatarsalgia and I needed to make a private appt with a podiatrist. Ouch! That is expensive!! Was he sure? Oh yes, quite sure bye bye!

The Podiatrist when I went examined me and said Mm? No. Not the feet. GP has it wrong. Again!! Really unfair on her taking money from folks with little, due to GP's lazy diagnosis. She said it's happening more and more that folks are sent without the drs doing a proper diagnosis. Or are they just clueless?

Anyway she was really nice and we thought about what might be triggering the pain. (She deduced it wasn't a foot problem thus she couldn't help.) She made me think and research and what we figured was my muscles were tight. Stretching my calf muscles like the runners do? made the difference. As soon as I tried the stretch I could feel it in my feet. Seriously, I could barely walk for the pain. Couldn't walk at all barefoot or bear my weight on my feet barefoot. My feet had to have support. Now, so long as I keep stretching each day, I'm able walk, shower without shoes, and feet are relatively painfree. A cure!!!

How many other folks are off their feet due to something so easily treatable?

I wonder if most or all pain has a cause and thus a cure? Just Drs fail to figure it out, allowing it to become chronic and involve more and more areas. Pain is a warning the body need attention. It is a shame it doesn't say, Ooh, calves are tight Matey, you need to get stretching else you wont be able to walk soon! Instead we have to turn detective. What is the body asking for this time?

Don't know if we can cure Fibro, but there are tricks for making it better. Many folks here don't take medication preferring supplements and natural treatments. They will say their methods are helping them.

Watch out for how many people who have been taking meds for pain, long term, are now having to come off them because they are causing damage and likely stopped working years ago. It can be a tough journey coming off these meds. Keep your thinking head on Re; Meds. Take only what you need and monitor carefully if they are doing any good. You are the one swallowing them and you are the one who may be damaged.

Major cause of disease and death? Prescribed medication! Look up Iatrogenic disease. Iatrogenic illness = Caused by physician or medication induced.

Iatrogenic conditions 3rd leading cause of death in US. And this is replicated in most developed countries. So if you want to stay alive, (maybe healthy too) eat a healthy moderate diet and exercise to maintain a healthy weight. Don't smoke, don't drink to excess and keep away from the DRs surgery. Ooh and don't stress over stuff.

[SweepSooty in reply to Al10]

Hi A/10, thanks for your reply. I am new to this website but had fibromyalgia for years and have always avoided strong pain killers, didn't want to get hooked on something that just makes things worst.

The physio I do in the pool is by a trained instructor and when I am in the water I can move better. The reason I was asking about medication now is due to the rheumatologist saying I need to be on strong painkillers and she wanted me to see the GP for her recommends.

I have felt uneasy about this but wanted to know other people's experience? To be honest I don't think I will be going down the medication road as I already take enough for epilepsy ect.

[Al10 in reply to SweepSooty]

Glad to know you have your head screwed on. So many folks have been trusting taking cocktails of drugs that Drs said were safe only for time to prove them damaging. The mental damage I've seen too, is insidious and scary but too often, it's only women and women are emotional and silly anyway aren't they? Hm!!! We each have to take responsibility for our own bodies and the risks we can cope with. I wish you luck getting back on track. I know it isn't easy.

[SweepSooty in reply to Al10]

Just to let you know not all women are "silly", you have been talking to one who in your words"have got their head screwed on!" Even so thanks again for your reply

[Al10 in reply to SweepSooty]

Ha you wouldn't know it talking to some GP's!

[LeighBlyth in reply to SweepSooty]

Hi SweepSooty, I think you may have misread @Al10 's last comment. They are saying the attitude to people with these weird unexplainable pains (mostly women statistically) can be/has been in the past is that they are just being emotional and silly. Which causes a lot of mental damage too. And that Al10 thinks that attitude is wrong and damaging (and I guess has personal experience with that attitude as many of us have).

The trouble is there is no magic cure, no drug that takes away the pain so ultimately you either end up with a doctor that is sympathetic and helps you by acknowledging your pain who manages to prescribe you something that might help a bit, or you end up feeling dismissed and passed from pillar to post hoping that the next person will go "ah yes this is it and I can fix it" but that isn't going to happen if you've had other possible underlying factors ruled out.

I do believe you can do a lot to help yourself however. Take control. Click on my icon and read my posts, learn to connect with your Base-Line muscles.

If you find being in water helps then do it - more of it. I spent a lot of time in a pool. A bit of swimming but a lot of floating and walking about, letting the water move me gently. Using a float under each hand to feel the balance in my arms.

A float under a foot to move my legs, whatever felt good.

[YASMINTINA FMA UK Volunteer]

healthunlocked.com/fibromya.... Hello , it sounds like you will be changing your doctor from one that didn’t seem interested in helping you with your fibro and hopefully a different doctor will act on this sit down and talk things through with you, this happened to me until I was lucky enough to see a different doctor at my surgery who is totally clued up on fibro, you have a mixture of conditions which must be very hard, I read a lot on the forum that trial and error for most of us until we get a med that works , hopefully you will get your appointment in the next few days. You will read posts and members can give you advice and have a chat that is helpful as sometimes we need this, but sounds like you need this appointment to get things moving, it still amazes me that there are still doctors who push the condition of fibro aside. I’ve posted a link above if if you would like to lock your posts as only our community can see. Wishing you well with going forward x

[SweepSooty in reply to YASMINTINA]

Hi YASMINTINA, thanks for your reply. First of all I will make sure that only community members can see my posts as I have already had a couple of comments that seem to blame myself, not what I was looking for. Second, getting any appointment where I live is like gold dust, when I saw the rheumologist at a hospital 30 miles from me, I had waited 6 months for the appointment. I was sent for blood tests to check for rheumatoid arthritis then got another appointment 3 months later. I received 2 texts to remind me of the appointment and I even checked myself beforehand. When I arrived and checked in, sitting in the waiting room I noticed 3 missed calls from the actual department I was in. I went to the desk to be informed they were ringing me half an hour before to cancel my appointment! I said NO and I got seen by the consultant. My blood tests came back clear and was told I needed better medication for my fibromyalgia but to see my GP, then I was discharged even though she said you are in a lot of pain. I feel let down by the NHS so wanted to find out what other people experienced

[YASMINTINA FMA UK Volunteer in reply to SweepSooty]

Hi again, yes know what you mean by gold dust, occasionally I’ve had a couple of replies that I thought were a bit off but in general most people are pretty good, NHS are over loaded as usual , that was not nice for you to get there and told it was cancelled sorry but that’s not good enough on the day unless a consultant had gone ill. Waiting times all around the country are horrendous , we had private until recently with husbands job you were seen within 2 weeks and some were consultants working in the nhs hospitals as well as doing private, but that luxury has gone now he has taken early retirement. You differently will learn a lot by reading people’s experiences here, weekends can be quiet. I hope you pick up some info along the way.

[Hidden]

“Just forget about it” ????????? There’s a knowledgeable doctor (not)

Lucky you’re a get up and go person and looked for ways to help yourself.

As you’ve other health issues I think you really need to talk this through with a doctor ( hopefully a good one) and write down their suggestions for meds. I’d then go to a pharmacist with a list of all your meds and the suggested ones and ask if there’ll be any clashes. I think a pharmacist would be more knowledgeable than a GP on this.

Everyone’s response to meds’ is different so it might be a case of you’ll have to try a few before you find the right one.

[E_lizab8]

Have you checked that your vitamins and minerals are optimal also a trial of a strict gluten free diet may be helpful. Ive found out that its true that good health begins in the gut.