Fibro/costchondiritis

[Mandy950411]

Hi everyone I'm on 60mg of zomorph in the morning and 30mg of them and 5mg of amitriine at night and have liquid morphine for inbetween when I'm in chronic pain which is alot of the time none of this seems to work I've been offered a lot of different things off my gp which none of them seem to agree with me my gp has now said he is out of options with me but hasn't offered for me to be reffered to hospital anything has anybody got any advice I also use hot and cold packs just feel like I'm at the end of my tether had Fibro for nearly 20 yrs but had costo 8mth xxx

[fibroglow]

Hi Mandy I also have this nearly at end of tether also!! Mine Started Beginning of May after 3 Week bad Chest Infection. 2 lots of Antibiotics Steriods as my Asthma ha got a whole lot worse. Ended up on Assessment Ward 2 Weeks ago. Had a load of Heart Bloods XRAY etc. All thankfully nothing awful. Last Dr said could be Teitze Syndrome. My symptoms seem similar. But older than what they say.

I take Butrans patches 15mcg lots of Inhalers use Hot Packs. Bathes with Epsom Salts everyday. But still huge struggle. Coming down of Steriods. Which is really took me too Total exhaustion. My Doctor asked Radiology if they could give me a Injection into the costo Joint.

I did receive appointment for September totally amazed as Pain Consultant said No injections would be possible!! Also wants me too come off my Butrans. But only Pain relief that works for me. Genuinely Hope You can get some more Help!! Could you ask to be referred to the Hospital see another Doctor!!

Take Care. X

[Mandy950411 in reply to fibroglow]

Bless yah man they carnt take you off what works for you survey injections has been mentioned before off a different gp I'm spying. Scared of needles and especially were it would have to go but heard alot of good things about them and the pain is so bad at times that I'm now willing to have them as you will know it's so hard living with both of these and it does take its toll on u i have a child nearly 6 and another nearly 13 and breaks my heart other been able to do with them what I want to as it's just so painful to move most days I just sit and cry as this is not the way I expected to be and sometimes I just feel that I'm just a burden or another problem to others u til I found this site xx

[Hidden in reply to fibroglow]

Yea get of the morpheme You willget adicted to it You say you going to the hospitial ? Have you been diegnosed with Fibromygia Yes you will be offers loads of different medication It's hard I take codrydamol and Pregabalin and Loranzipam to sleep It concerns me the amount of morpheme you say your on

[Mandy950411 in reply to Hidden]

Yeah I have been diagnosed with fibromilga and it worry so me to the amount of morphine I am on but all the seems to do is keep uping the amount with nothing else working x

[Hidden in reply to Mandy950411]

Ok I see I hope you keep good well being xx

[Hidden in reply to Hidden]

This works for me codrydamol 500 mg 3 pills three times a day At night 2 Codrydamol

Pregabalin 250 mg and 400 mg Loranzipam you will sleep for 6/7 hours I'm not a Docter so it's up to you Shirly you don't want to become s merphey junky Doo you

[hebden]

Hi Mandy I was diagnosed with fibro 2014 and have what I think is costochondritis since feb. I have pain in my upper back going around my left ribs to the centre of my chest. Tender to touch and so painful all the time. At times its hard to breath and sometimes feels like what id imagine a heart attack feels like. It gets so bad I can't move with the pain and I end up leaning over the back of a chair in tears. but the first GP I saw in march about the pain ignored me saying its fibro, the 2nd GP in May said it was muscle strain from using crutches and the last one I spoke to about it in June didn't even examine me and said that the last GP was right as he used to be a physiotherapist and knows his stuff. I don't think he knows much at all and my faith in the medical profession is increasingly diminished. We are told not to look on the internet for things medical but when you get such poor response from the so called experts what are we supposed to do? I have tried magnesium spray, voltarol and tens machine and all reduce the pain slightly but it is always there. I too am at breaking point. big hugs Joolz.x

[60Chrissy in reply to hebden]

Gosh you sound in the wars too! Pain is such an awful thing to cope with and the awful thing is that no one can see what people are going through so you don't get the help or support needed. Likewise in the past unexplained pains to the point I have gone for xrays as I was sure I had broken a rib or ankle bone because of the agony but nothing showed up as broken!!!

I am currently reading "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome" by Dr. Rodger Murphree. I have suffered over 12 years and had lots of different medicine but I am anti taking meds and never stayed on them long enough.....I am glad too as the more I read about this Fibromyalgia condition and the more research I do.....most people will tell you very little medicine can help them and they just either get addicted to the strong pain killers or end up with awful side affects - particularly weight gain!!

I have often read that Fibro sufferers have high levels of "P" substance which is in our spinal fluid...this affects our pain threshold....say someone pushed your arm playfully then you would feel they punched you and it would hurt a lot!! So when I read Dr. Murphree Chapter 10....(I think) he said Serotonin blocks substance "P".....this was a missing piece to a puzzle!!! He also states that with REM sleep we produce Serotonin....every level of stress in our lives depletes our Serotonin level, even when we have too much sugar in our system - Serotonin is used to prompt insulin to kick in to sort our the sugar in our body.....so adding all of this up.....Fibromyalgia suffers do not sleep much due to the pain.....no doubt the amount of stress I/you have been under probably reduced the important chemicals in our body to the point we have run on empty!!! So no Serotonin....."P" substance overload, pain overload, no REM sleep to produce Serotonin.....vicious spiral downwards.

Dr. Murphree suggests 5HTP (50mg tablets) which is a plant (I believe) which can be bought at Holland and Barratt (sale £8 normally about £15) lol no energy for buses so ordered delivery for £3.99 next day! This helps to build up Serotonin levels and boosts Melatonin too!!! He believes priority for Fibro suffers to start improving their sleep. Also recommends to take other vitamins such as calcium, magnesium and B vitamins.

He does facebook and various webinars.....I am taking 5HTP (50mg)half hour before bed. When I first took one omg my brain felt like it was "firing" and it felt like a sponge screaming for more.....it was weird. Even when I came home lunch time from work.....my brain wanted more because I felt I was running on empty!!! So I listened to my body and took another 50mg lunch time I did that for two days. Now I just take one tablet before bed and I do feel I am sleeping deeper and I am sleeping a little longer.

Try and get the book from Amazon....it is worth going through it as he has a couple of questions to ask yourself.....to try and work out which chemicals your body may be depleted in.....I showed up I was short of most things....so he suggests prioritise taking 5HTP....I am not a doctor.....perhaps you are already on meds.....so you may need to check out with your own doctor first what is best to do.

In my opinion my understanding is that doctors are "Reductionists" they help with the pain and presenting problem but they do not go to the root cause of the problem to stop it.....so you could end up taking the medication for ever because no one helped you stop the root cause.....so many side effects with medication you end up on more medication for the side effects.........only one benefitting is the Global pharmaceutical companies.....making profit on our misery....that's my opinion.....stress is the biggest culprit in our lives.....I honestly believe Fibromyalgia is a result of "Burn out" Not enough vitamins in our food where Noraphenine chemical is produced, not enough rest or sound sleep where Serotonin is produced and relaxation and no time to exercise our bodies where the chemical Dopermine is produced (sorry unsure of spellings of chemicals). These three chemicals are desperately needed for our brains to function! I hope I am not too random with information.....I am just trying to figure it all out myself but happy to share as I honestly believe that Dr. Murphree is onto to something which might possibly give Fibromyalgia sufferers hope!

Take care.

[Newtali in reply to 60Chrissy]

This sounds very interesting 60chrissy. Might be worth putting details of this on a separate post for others to read about as well?

[60Chrissy in reply to Newtali]

Ok will do. I wonder if I can copy the above post so save tuping up again? Hooe the info helps 😀

[Newtali in reply to 60Chrissy]

Yes you should be to do that.

[Dawnyclay in reply to 60Chrissy]

Wow very interesting. Thank you. I will definitely give this book a read. I've tried everything else & read more literature on fibromyalgia than you can imagine but always interested in new information especially as doctor, rheumatologist & pain relief clinic have all basically said they can't do anymore for me xx

[Mandy950411 in reply to hebden]

Sounds to me exactly like costo it was when I got took to a and e with heart attack symptoms that I got diagnosed with it it actually might be worth u going there and explain to them as my gp did not listen at first but I'm in and out of a and e all the time with the pain when it's bad I think u should do this and just go in defo sounds like it to me xx

[hebden in reply to Mandy950411]

Thank you Mandy950411. I almost ended up at a&e last week when the pain got so bad I couldn't move. I should have gone but all you hear is how stretched NHS is. I know I shouldn't feel like Id be wasting their time as one day I may not be. gentle hugs Joolz.x

[BlueMermaid3]

Hi Mandy950411

Out of interest have you been offered a course of antibiotics for the Costochondritis?

I have had it several times myself.

It is when the muscles in the chest wall are inflamed.

The first time it was diagnosed I was given antibiotics for it.

Were the injections offered for your general pain or for the Costo?

Have you ever been referred to a Pain Clinic?

If not, perhaps it would be an idea to ask your GP to refer you to one if he has run out of ideas.

Other than that you could be ask to be referred back to the Rheumatologist that diagnosed you, as they are sometimes able to offer meds that your GP can't initially prescribe.

I suffer with constant severe pain and find that Magnesium Oil Spray helps to take the edge off my pain.

I hope you are able to get some form of relief.

Wishing you a peaceful day.

Lu xx

[Mandy950411 in reply to BlueMermaid3]

I have been on antibiotics but was for chest infection my first gp put me on the list for the pain clinic and when I seeny regulargp he took me off saying I don't need all that I was not happy last time I was in a ande they reffered me to a rapid chest pain clinic but that just was all round my heart based and the consultant there says it is actually just my costo which pleased me knowing my heart was OK but still feel left in the dark if that makes sense my gp said don't worry it will only lasted a couple of week well 8mth later and still suffering xx

[jackie4ball]

Hi Mandy

Both myself and a friend have been on MST which is supposed to be exactly the same as zomorph however when I was given zomorph (cheaper version) I realise it wasn't agreeing with mr and wasn't helping the pain my friend also said herGP had changed hers and she was finding the strength of them was not the same as the MST just wonder if you could ask for MST instead I am surprised your GL hasn't upped the MST to cut down on the oromorph mine tried to do that but it would mean taking 70mg MST morning and same at night untilmy body got used to that dose and I needed to up it again so like you I take MST morning and night and oromorph for breakthrough pain which has been bad at the moment. Mine seems to be being affected by the weather as well as other possible factors. You are on a very low dose of Amytryptiline raising that a little bit might help a bit even the leaflet states starting dose is normally 75mg but I do understand that that can leave you feeling tired the next day unless you take it fairly early evening. There are other pain killers out there to try I heard of one that was supposed to be non addictive I read it in either the notability magazine or a disability magazine it's called Palexia but not sure if all GPS can give it initially when I enquiried my GP said he was red lighted to give it next time I asked a different GP about 18 months later he gave it to me but he didn't give me slow real ease like the MST so I couldn't take it because of the withdrawals but I did find later they do do a slow release version it is supposed to help people with fibro. Targets nerves at base of the spine or something which then sends pain relief to where needed it was so long ago I read the article now. But maybe worth asking!

Hope you get some relief.

Jackie

[Mandy950411 in reply to jackie4ball]

Thank you and yes I will.ask my gp about this and see what he says xx

[BlueMermaid3 in reply to jackie4ball]

Hi jackie4ball

Just to let you know that most Rheumatologists start newly diagnosed people on 10mg of Amitryptyline and then work upwards if needed.

I just wanted to say this in case anyone is thinking they are on the wrong dose.

Hope you're doing ok?

Lu xx

[jackie4ball in reply to BlueMermaid3]

Thanks Lu sorry didn't mean to mislead anyone just been on amytryptyline for so ling now 10 mg wouldn't do a thing lol and was reading the leaflet recently and it said about starting dose being 75mg but that could obviously be for depression use not muscle relaxant. I at one time was on 250mg a night I am now down to between 25 and 50 mg because things were happening when I was married and on that dose that I had no recollection of. Which was quite scary at the time. Having hand surgery tomorrow so hoping it all goes well and improves the use of my hand hopefully with no pain once I have got through the 3 months of recovery and physio etc. Apparently a fairly new type of surgery just wish I was having my knees and hips done at the same time struggling a lot at the moment with them. But managed to visit Dawn Tulips123 yesterday which was lovely. I hope you are well

Jackie

X

[Pooley66]

I am looking into something called Low Dose Naltrexone (LDN) you could find out more about this on Healthunlocked site or LDN Research Trust