living with chronic pain inside and out

I have stevens Johnson syndrome which means I can not take any type of pain relief,i also have depression,arthritis and degenerative disk desease so ive lost 4 inches in height.and like everyone else I was told that the nhs couldn't do anymore for me.i am weiry of the chronic pain I'm in and I am obese I'm going round in circles doing the same routine everyday clean house,feed the pets,make meals and sit and stuff my face with anything that will break the monotony of life at 52.im loosing the will to live.i also am a self harmer too tried many times just to get away too my own wee world but I'm not allowed.what can I do.

[RAYJAYC]

Hello! 😊

You've come to the right place for someone to listen to you! I could've written your post myself apart from the SJS.

We all understand your feelings and the constant pain; we all deal with it differently so hopefully you'll get some replies that spur your imagination into trying something new maybe?

Do you have a considerate GP? Do you attend a Pain Management Clinic?

Have you tried massage, acupuncture, yoga or pilates? A Tens machine? Do you see a physio?

I appreciate it's a lot of questions but if we can get to know you a little more, we'll be able to support & help you!

RJC

[Hidden in reply to RAYJAYC]

I can not take pain relief or anti-histamines due to sjs,i have tried most of the things you suggested,im not being a moan about the pain I'm just tired of my bed being the only place I get comfort I don't want to live my life in bed.

[RAYJAYC in reply to Hidden]

I so know what you mean but you have to take control of this now; little stretches and gentle exercise, shown by a physio, can go a long way to at leaset getting you out of bed & into a slightly brighter mood.

There isn't one specific treatment that can alleviate this; a combination of small changes, carried out daily or before an activity, are what's needed.

You mentioned the Pain Clinic; what have they suggested? My psychologist is working with me on mindfulness & meditation (I'm not that good at it yet) so I'm learning what's important at a specific point in a day or pain flare.

I appreciate that you can't take any pain medications; does your SJS inhibit antidepressants, nerve pain type, muscle relaxants & tranquilisers too? Many meds have positive side effects that can help with pain; as you run an SJS support group, you're probably well aware of this but sometimes we get blinded by science and forget to look after ourselves!

Are your vitamin supplements prescribed or just bought 'over the counter'? As Coastwalker has said, there's evidence out there for these deficiencies + spinal degeneration. I'm looking at it at the moment; we need stronger, calculated thus prescribed types for this so a 'multivitamin' tablet bought in a shop won't do it unfortunately 😩 More blood tests required but you have to have your GP or pain doctor/consultant on board; I think some dispute the suggestion!!

Please understand that I/we totally understand the relentless affect that pain has on you; we're very familiar with 'not wanting our bed to be the place we spend most of our day' too. We're with you on here..........

RJC

[Coastwalker]

Look into vitamin deficiencys megfaichny.

Spinal degeneration problems can be down to a vitamin B12 Deficiency.

Vitamin D helps hips, lower back, buttocks and leg pains.

Vitamin D3 is an anti inflamatory.

I thought vitamins were just little sweets, but have now learnt that higher dose vitamins can sometimes play an important role in recovery.

Vitamin D helps prevent many illnesses.

vitamindcouncil.com for safe up to date doses.

Also you mention depression, chronic pain and obesity, have you had your thyroid bloods checked ?

[Hidden in reply to Coastwalker]

I from today have decided in looking after what goes into my 52 yr old body and the way I think so I have started on a supplement called FORZA raspberry K2 with choline for the break down of lipid fats.2 in the morning and 1 in the afternoon, I am also having a colon clean out and a change of diet,I'm so sick of feeling tired and going to my bed at 7.30 every night. I am bored and I also take the dry boke at my meals, half the time I eat toast or cereal, I have also researched yoga for the over 50's, I'm sure my body's trying to fight this chronic pain and too say I don't like my gp is harsh they just are not interested in alternative ways.my liver although its the only organ in our body to re-generate itself has been bombarded with meds all my life since infancy so I'm not going down the road of tree hugging just mindful of my skin,eye,s,hearing taste and inner self,im so sick of being sick no one can do this but me.so here goes.

[Coastwalker in reply to Hidden]

Good to hear you are taking control of what goes into your body Megfaichney, many illnesses are gut issue related, you are what you eat.

* K2 goes in partnership with Vitamin D3. Both D3 and K2 are anti inflammatory.

They say keep off the white stuff - flour, sugar, wheat etc. also bad oils, keep to coconut oil for cooking and keep olive oil for salad toppings.

Yes medication can be causing pain and inflammation, every prescribed medication has many side effects and taking several types of prescribed medication together can be lethal, even the medics admit they have no idea of the consequences, so how dangerous is that ?

Good luck with your new body regime M.

[Hidden in reply to Coastwalker]

I have decided on top of my new food and exercise lifestyle that I do like everyone on this earth needs a treet,i stopped smoking after 35 yrs 6 yrs ago,i don't drink alchol and I need to have a good will power so ive decided not to take everything out of my daily food intake and bake shortbread with brown flour and almonds instead of sugar.i will make a treat once a week if ive been good,i am kind of feeling a tingling affect in my skin this afternoon I think it might be the forza so I will reduce it to 1 at breakfast time and 1 at lunchtime just to see if it will make a difference.

[Coastwalker in reply to Hidden]

You have very good will power to give up the smoking after so long and yes we do all need a treat now and again otherwise life is not worth living.

Good luck on your new eating plan, hubby and I are going to look into organic foods and delivery services soon.

[Hidden in reply to Coastwalker]

see my daughter done organic for her and her 1st born 9 yrs ago then I did too to support her but the thing is she couldn't keep it up for so little info about it then. And me well I only have a limited amount for food budget so I'm thinking I couldn't keep up with paying over the odds for organic food and instead of organic or even calling it a diet would be my 1st failure, so I know if its reasonable prices and easy to get and cook( as I know I will loose the will to live if its too hard),be truthful too myself and get started not on a diet but a healthy food plan. Its like when I stopped smoking I didn't enjoy it so much when the pubs and clubs stopped it indoors, then work became worse because I had to stand outside for a fag no matter what the weather. I just didn't enjoy smoking and smelling of fags in my home and on my clothes.so my mind set is, because I don't enjoy quick freezer meals anymore this is how my healthy food plan should work.no scales no pushing myself to do 10 push ups. do you get what I mean? what do you think?

[Coastwalker in reply to Hidden]

When I say we are looking into going organic, we are also looking into the prices of going organic too.

Also thinking of juicing our fruit and veg, juicing we know it helps keep the cancers away, it doesn't have to be organic, just all nutritional healthy food.

You need to do things your way meg, only you know what will work best for you, yes, best not to call it a diet, diets never seem to work for many. I have never been on a diet and I cannot remember how many years ago I jumped on the scales, I go by if my clothes fit or not, then just eat less, but I never miss eating as that can cause weight gain and fat storage. I went through my riding a bike phase, that did keep me fit, it was very addictive, but walking is just as good and keeping on the go and not sitting around for too long. I do not do believe in doing strenuous exercise.

Many smokers gave up or went onto electric cigs when the smoking ban came in, I knew many who gave up, they must have needed good will power to get through it. Giving up smoking is another health bonus meg.

[Hidden]

Meg, did you develop Stevens Johnsons Syndrome from taking prescription antibiotics that was ordered by your doc... but as for your weight I was a RE for over 30 years and have tried every diet in the land even back in the day 'Dr. atkins diet revolution which was low carb and kept my weight down for years, at least 20 but it can be very dehydrating and as I aged it was harder for me yet the 'Ketogenic Diet' works great for me but don't believe the ones on the net that say 'high fat' you can't eat high fat nothing and lose weight and you don't est a lot of protein either... you do it good fat and it will take your appetite and that's why it works for me... but remember you don't want to try and diet plan that calls for high fat.. also the fat you do eat or drink like I add coconut oil to my coffee and it's delicious and takes my appetite so well that I even started fasting for like 18hr/day sometimes and fasting heals the body... long story

[Hidden in reply to Hidden]

I'm taking supplements,vitamins and woman over 50,i got sjs through taking pain relief after my 3rd child was born,i have had it for 30 yrs there is nothing gp's,hospitals,or physio can do the pain management says if I take another reaction with sjs I would not survive it.i have been running the only support group in Scotland for sjs since 2011.its very rare.

[Hidden in reply to Hidden]

I was given a pain killer after I had a blood transfusion and reacted to that I have had 9 reactions to different meds,i like many others with allergies are more aware of medicines and what they are for and ingredient's.i just wont put my life at risk for anyone one especially for medical staff as a guinea pig if you need to know more sjs Scotland on google will give you a insite in what sjs is.

[Hidden in reply to Hidden]

I have been on so many diets I've lost count, so I'm not dieting I'm healthy eating .no crisps or biscuits or chocolate hubby too, my daughter smiles at me looks at all the fruit and veg and says I wont keep it up, but I watched Whitney "fat girl dancing: and although I'm not as big as her, I watched how she fell face down into the ground and people treated her badly, so I watch her constantly and it keeps me motivated on how much I want to feel healthy again and walk the dogs which I haven't been able too for 4 yrs now. Less weight on my bones is a good thing too.im not doing this too loose weight but to feel healthier I think a different mind set would suit me.