Fibro treatments, any ideas?

[0118sara]

Hi everyone

I have just found this site and have been looking for info on treatments for Fibro.

My story is I was diagnosed with Fibro in 2011 after 3 spinal surgeries including a fusion of 3 levels in my lower spine first through the front and then through the back, between 2007-2011, however it was just that, I was told I had fibro on top of the spinal problems and oesteoprosis and that was it, no advice etc on how to treat symptoms. I was also advised I have vitamin D deficiency but since 2011 I have not really mentioned Fibro again, over those years my husband and I separated because of weight gain and my disability changing me unregonisably(his words) after 18 yrs tog, so I am now a single mum to 3 girls, and to put it mildly I am struggling.

Would be interested in any treatments anyone could recommend to help me have some sort of life because atm I dont feel I have one.

Sorry for long post just felt best to outline my story so far, this can't be it surely.

Oh I forgot in jan 2014 I had a spinal cord stimulator implanted into my spine which does help me cope with back pain, but I need help with Fibro.

Any ideas

Hope everyone else is coping ok with the horrible situation we find ourselves in

Alison x

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, I can only speak for the treatments that help me, I'm sure there will be others that I don't use

I manage my symptoms using a combination of medication, heat (capsaicin cream for spine, heat pads etc), reiki and crystal therapy daily, holistic therapies such as aromatherapy, massage), regular exercise, pacing activities, relaxation, meditation, pain management techniques.

What helps one day might not help the next.... So I chop and change amongst everything depending on how I feel each day.

[Fibrofoggiest in reply to Hazel_Angelstar]

Gosh Hazel, you have my admiration for bearing capsaicin, I was given it for my shoulders and it literally burnt me, I had only put a tiny bit on and I came out in huge great blisters and of course didn't use it again. My pain management team said some people do react badly to it, but that it can be very useful for others who tolerate it, so I'm really pleased for you !! 👍🏻😃

Foggy x

[Hazel_Angelstar Administrator FMA UK Staff in reply to Fibrofoggiest]

Yes, I know a lot of people who just can't tolerate it. I can use it on base of my spine, but tried using it on my legs once and it burned terribly. X

[Fibrofoggiest in reply to Hazel_Angelstar]

I'm glad it can bring you at least some relief somewhere 👍🏻😀

[Stephrm44 in reply to Fibrofoggiest]

Have you tried peppermint oil, I buy a pure version from a company called Caipan, you rub a few drops on your skin and it is hot and cold at the same time and can help to ease stiffness and tension, smells nice too.

[dillydally1 in reply to Stephrm44]

hi, hope you don't mind me saying but I love your lovely cute picture x

[Stephrm44 in reply to dillydally1]

Thanks, I came across it on Pinterest so saved a copy, if I am feeling down I just look at it and it always makes me smile.

[joannie1964 in reply to Fibrofoggiest]

fibrofoggiest I hear you with regard to capsaicin! I was given it for tennis elbow, blimey give me tennis elbow pain anyday over that cream. Felt like my arm was in the microwave!

Jo x

[Fibrofoggiest in reply to joannie1964]

Hi joannie,

I felt exactly the same with my shoulders, they were bad but the capsaicin was worse 😳😳, poor you 😕

Btw, please call me Foggy, everyone does 👍🏻😃😃

Foggy x

[joannie1964]

hi 0118sara, I am so sorry to read about your situation. And I'm sorry that you have had to deal with the loss of your partner on top of everything else. Like you I have fibro which was only diagnosed a couple of months ago but also CFS since 2010. Ive had no guidance at all from the rheumatologist or gp about how to handle it and tbh the most help I have had is since I joined this group. So I will follow your post and hopefully pick up some tips as well. What I will say is with both of my diagnoses I struggled to accept them and the limitations on my life not least losing my job in Feb but slowly listening to everyones advice on here I am now coming to terms with it!

So good luck lovely and sending hugs.

Jo x

[0118sara in reply to joannie1964]

Thanx for your replys, sounds stupid but hearing I'm not the only helps, as u begin to think it's in ur head, I'm going to doc 15th June to discuss what I can do to help myself, I'm already on so many meds, morphine being on the list so want to try something else.

Moving house 19th June so very stressful time ahead lol

I will keep u posted xxx

[Hazel_Angelstar Administrator FMA UK Staff in reply to 0118sara]

And all the stress you are under at present won't help the fibro symptoms.

Xxx

[maggi999 in reply to 0118sara]

Joannie1964 and 0118Sara,

I too am recently (partially) diagnosed and I am waiting for my second appt with the rheumatologist for him to confirm diagnosis but it has been cancelled for the third time!

I took it upon myself to request a referral to a pain clinic from my GP, which he did. The pain clinic discussed various medications with me, but it is a matter of trial and error to find one that is:

a) effective for your particular symptoms

and b) is tolerated by you.

I was also put on a six-week (one morning a week) course with physio's that is aimed a teaching me how to manage my fibromyalgia.

We start an exercise regime, have weekly talks about subjects like 'the pain/depression cycle', 'pacing', understanding the condition etc.

I've completed week three so far and it has given me some coping strategies already.

Ask for the above from your GP - remember to point out that Fibro not only affects you but also your two children - the better you cope then the better they will thrive!

[Fibrofoggiest]

Golly Sara, it sounds like you have had a huge amount of problems to handle and I can completely understand your frustration at not being able to get on top of the fibro. That having been said, you say you are moving house, and recognise the stress that it will bring, so I fear from my own experience, now will be a hard time to really address the fibro.

I think you should press your GP for a referral to a pain management team, and don't be put off if your GP isn't immediately agreeable seeing as you've said they have ignored the fibro pretty much for a long time......insist, and don't take no for an answer, would be my suggestion.

I too have chronic back problems due to osteoporosis and have had several spinal fractures.......are you on any medication for the osteoporosis? If you are that should include vitamin D which normally comes along with the calcium if you are on such things as Calcichew.

Gentle exercise is also useful, and again maybe you could ask your GP for referral to something like hydrotherapy which being a more gentle, but equally effective treatment, especially with your spinal problems, could be very helpful.

I am sending lots of positive healing vibes your way 😀😀

Foggy x

[Vinchento]

Hi everyone, it is so good to see there is support on here for people with Fibro, I too have this condition as well as Osteoarthritis in my hands, sometimes I don't know which pain is from which ailment and I have an underactive thyroid also. When Fibro is diagnosed its as if they just tell you what you have and then leave you to find out ways of treating yourself and it can be complicated, if you have so much other stuff to deal with its not so easy. My brain is like a fog even more so today. I do get support and understanding from work and from home but I can see they get bored with asking "how are you" as I keep saying the same thing...........................I ache!

Swimming really helps me and I can totally recommend a hydrotherapy pool if you get chance, problem there is if you are working by the end of the day I am so exhausted I need to home to rest. I personally find it hard putting clothes on as it is never mind taking them off then struggling with a swimming costume which I tend to get trapped in. I am reading a book just now by R Paul St Armand and although the treatment using guaifenesin looks as if it works there is so much you have to do before it actually does.

Has anyone tried this protocol?

x

[TheAuthor]

Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I have pasted you a link below to our mother site, FibroAction which hosts loads of useful Fibro information:

fibroaction.org

I am so genuinely sorry to read of your current situation, and I sincerely hope that you can find the answers that you so desperately desire and deserve. Apart from medication for my Fibro, I also use a TENS Machine which I personally find very useful and therapeutic. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[sandstone]

Hi thought I would share my pain relief with you , maybe it might help someone, I do use capsaicin for knees and foot (arthritis) does burn but not on outside but in side of knees feel like their on fire. No blistering at present, I take pregabalin 300 g a day, Co codamol, i use tense machine (anywhere that hurts, a massage cushion to witch i i sit on, massaages back n shoulders, a neck cushion and a foot pad all provide massage and heat . acupuncture next week and try to go to swimming pool as often as I physically can...i don't swim as my limbs really hurt if I do...but I walk in water round and round the pool, and then do some bending and stretching (i only do about a minute then walk round halfway then do another minute ....do i find anything helps ? If i am honest i am in constant

Pain which does ease, but like mentioned in a previous post sometimes and sometimes not trial and error I think. I am being referred to pain clinic for a complete overhaul on my medication and supplements. ....

i have low iron levels so take iron tablets and folic acid tablets for that.

magnesium for bones, vitamin D and Calcium capsules for bones and stuff.tumeric for digestion and multi vitamins

Hope you find relief somehow x

[Awful]

Hi l have started taking Turmeric Tablet 1 a day this is 5 days now, and hair,skin and nails bears 2 a day as my hair is falling out and nails peeling and breaking, But l also have Loads of other illnesses. From Awful xxxx