This is my first post, iv loved reading everyone elses stories and advice they have received and it is lovely.
It has been a horrible year this year medically and then unfortunately due to the medical aspect it flooded the personal life and that went to ruins too.
I'm sero-negative sle have been for years but took years for a real diagnosis even tho been treated the same for years am currently taking azathioprine, plaquenil, pred, ampytriptyline, laprozole, naproxen, oromorph, co-codomol, sertaline and antihistamines. Which if all them weren't a pain enough daily they've constantly been adjusted all year due to constant flares no control and hospitalisation and it's still out of control go back to see rhumey in 5 weeks to see if improvement if not got to try another mix, I'm just so fed up now iv lost my job because of this which I loved to pieces iv had surgery my syptoms are progressive and now got a tremor due to steroid use and constant nausea with sickness and just don't know what to do anymore. And seems like there's no improvement anymore there used to be for a while but not no more and now rhumey even telling me I can't go back to work in the career field I was in and don't want me on full times hours it was the only thing to make me feel normal and now I can't even have that. Weight gain is a joke iv got a gorgeous little boy I should be enjoying as he's starting school in a few weeks and this year I just haven't been able to, any advice for help of symptoms or anything really a new perspective from understanding people would be lovely.
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Squeeshy
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First of all let me congratulate you on you and your boy, it sounds like you absolutely treasure him, keep at it and focus on him, he needs you around. If you ever think that some days are just too unbearable? Think on the love you have for him and how you must look after him.
I am sorry for all this concoction of drugs you've been taking, it sounds absolutely terrible and exhausting, specially without the support from your partner.
It may be worth a try to help reduce inflammation, have you every heard of Devils claw? It's a really good herbal anti inflammatory you can get from Holland and barret as "flexi-herb", try and take 2 in the morning and 2 in the evening alongside an evening dose of 5-htp also from Holland and barret. Ideally I would like you to come off the painkillers only and substitute them for this natural remedy.
I don't suffer from Lupus, mum does, and since trying those, hardly are the days when she takes paracetamol even. It really has helps her, so maybe worth a try.
Thankyou so much willing to try anything so Il deffinately give it a go thankyou so much!!! Would love to get off the painkillers there was a time I rarely needed them and was able to be a lot more active and found yoga and swimming to be so helpful but just haven't got the strength energy or confidence to go these days with all the weight gain as well, but thankyou for the advice could you tell me a bit more about devils claw does it state where the anti inflammatory properties come from x
The anti inflammatory properties comes from the root itself, it is a well known natural source that reduces inflammation.
The 5-HTP will help with sleeping and nerve pain and also stimulates serotonin to help lift your spirits up, add some B12 too to help with the nervous system.
Devils claw - 2 in morning and 2 in the eve
B12 - 1 in the morning
5HTP - 1 at night
Get the highest strength you can find in Holland and barret and after taking these for a week with the rest of your normal medication, start titrating your pain relief slowly. Hopefully it will work for you like it has for so many people
Deffinately willing to give it a try Il go get some in the morning and let you know how I get on thankyou for the advice much prefer natural sometimes x
Many doctors don't see the benefits of natural medicine, because what is the quickest and most controlled way for doctors to treat symptoms? It is to medicate with drugs that are synthetic but have all the background behind it.
The reality is, natural supplements and herbs are not only the healthiest and safest option, but also what will benefit your symptoms long term. No point masking symptoms with all these pain killers when you could just treat them, even though it may take a couple of weeks for your body to take in these supplements.
Start with taking the co-codamol away and the naproxen, once and if you don't feel any worse after a couple of days then remove them completely. Try it for a couple of weeks, then start the oramorph titration, but visit a doctor to do that as morphine is an addictive opiate.
Makes absolute compete sense luckily iv had enough practice of reduction and coming off of morphine as I do it ASAP when I can I have quite lovely and open doctors used to do acupuncture and hypnotherapy introduced by the doctors and even given a coupleading of recommendation from then so I'm lucky in that retrospect it's only been probably the last 9 months nothing else was working apart from the sttong painkillers but more than happy to try some natural alternatives thankyou
I have a friend who is a GP, her dad was the nursing director for the local hospital for over 40 years and both are acupuncturists of Chinese origin. She has said to me many times the following: " Chinese people know what must be treated by Chinese medicine and what needs to be treated by western", not to mention their healthy diet which plays an important part too. (Genetics I say)
One thing I must mention too if you are "over a certain age" is to include B6 and folic acid supplement too in the morning with the other supplements, most women find that since starting on "the change" their health deteriorates.
I wish I had the change to use as an excuse I'm 22 so unfortunately can't use that think that's why doctors are confused they can't figure out what's caused such a rapid deterioration but thankyou for all your advice and kind words x
Look forward to hearing from your progress, feel free to message me privately and let me know how you get on. I will only be able to see how it works and understand it, also be able to help others if I get a lot of positive outcomes.
Please do not take these complementary therapies without first discussing it with your consultant. Devils's Claw has been reported to interact with anticoagulants, painkillers, heart drugs (for example digoxin) and stomach acid drugs (for example famotidine), it can cause side effects including; rashes, stomach upsets, diarrhoea, headaches and loss of appetite.
Further reliable information is available on the Arthritis Research UK website;
I don't recall ever posting on a post of yours, could you please tell me how it has helped you, what have you tried from my suggestions and what difference has it made compared to how you were previously?
Bare in mind that my recommendations are non-clinical advise as you are not my patient, it is merely something to supplement you and help you, but it is dependant on your symptoms, could you explain to me what they are and how I've helped those?
I read on this site when u advised to someone that when your mum started taking B12 and 5-HTP. I bought them the following day and started on them. After 2 days felt so normal. I have since then stopped taking Amitryptyline and l am not taking as much TRAMADOL as l used to and paracetamol once in a blue moon. Went back to work with the agency and I am soo fine. Dont feel soo tired and pain as i used to be before when l was told not to work anymore coz sometimes afterwork could not walk or be able to get out of bed for some days. now l have booked for Ocupancture for next week. I VOW to myself that anything not chemically l will take as long as it takes away the pain and mostly the tiredness. I have been dignosed withChonic kidney disease, SYSTEMATIC LUPUS Erythermatoutus, Lupus Nephritis (P- ANCA Positive, Ant DS-DNA positive, Lupuscutaneous Vasulitis, Menorrhagia (uterine fibroids) and Hypercholesterolaemia 3yrs now. This can attack me any how each time but mainly tiredness pains and aches and it locks my joints that i cant walk even feeding myself.
CURENT MEDICATIONS
MMF 2gme bd
Pedinisolone 5mg, (but started from 60 mg)
Losartan150mg
Lanzoprazole 15mg
Amitripyline 10mg (just stopped it)
Norestrostorone 10mg bd
Doxazone 4mg bd
Ferrous sulphate 210mg
Folic acid 5mg
Furosemide 80mg bd
ESA for anemia twice a month
Tramadol 50mg 3 times/day (but l am down to 1tab/day
All thanx to ur advise and as long as it herbal l will try it
That's absolutely fantastic, I am really glad that it has helped and made an impact. Have you tried the flexi-herb (Devils claw) anti-inflammatory too?! That will help you on days when you are in a lot of pain due to inflammation or general pain.
2 x morning
2 x night
Would love to hear more from you and how you are progressing, feel free to message me privately.
Thanx Emt1mb. I am quite happy with the progress I am going thru. Even my Consultance are begging me to work for them but l find it unapropropriate so next week l am starting a new job with the NHS Teminally ill patients with cancer. chaft l am. I have written down the Devils claw. Will deffinately try it. I do have a personal trainer at the GYM and l walk on the tredmill for an hr everyday if l can. thanx for the advice. Thanx for giving me the opportunity to privately email u
I've also just created a post so people can exchange and let me about their progress, that will help others on trying these alternatives to drug therapy. Would be good if you could post to share your experience on it too.
Please make sure you discuss any complementary therapies with your consultant before starting them. There is a good chance that Devil's Claw could interact with one (or some) of the treatments that you are currently on.
Goes without saying, any supplements MUST be cross referenced with your own medical professional to ensure it is safe to take with your other medication.
So sorry to see you are struggling .....whilst I have no real advice personally I would be questioning the cocktail of medication. Sometimes the side effects and combinations can be worse than the condition. Hope you can get to the bottom of it
Thankyou so much I agree the side effect at times are worse but because they don't want to start extremely strong drugs trying a cocktail only used to be on a couple a day now I feel like a walking chemist.
From personal experience Azathroprine gave me really bad stomach ache and resulted in a violent vomiting episode, the like of which I have never experienced before. Pred made me shake and affected my legs so that I could not support myself, Planaquil gave me awful indigestion and painful wind. Naproxen and co-codamol are reknown for upsetting your digestive system and whilst the Lansoprozole will protect your stomach they could be affecting other parts of your system. Co-codamol is a combo of paracetamol and codeine..which is morphine based. You are taking a pretty hefty mix of potentially mood altering meds....on top of an illness that can affect mood..best of luck
So sorry to read of your serious health problems. Hope your Rheumy can suggest a more effective drugs regime!. Sorry too about having to change your job or number of hours. You could go to your local Citizens Advice Bureau who will run a benefits check to see what help you could be entitled to with a change of working hours and they will help you claim as the forms have to be filled in in a certain way .
Went to local CAB acording to them apart from jobseekers at the moment they can't help apparently due to the fact it's not been a constant flare continuously apparently a complete joke in my opinion but thankyou for the advice might be time for a re trip down there x
About benefit get intouch with your local council and ask that u need help from Tanancy Support. I was given a Suport worker who has helped me with quiet a lot of Beneffits and most of my debts has been wipped off due to them. They support u in every health probs u got. My house has been adapted to my needs. Try them the can do the forms for u coz me l could not write so the did a lot for me and l recoment u try lol
Thankyou defiantly worth a go but my councils a complete joke was in a battle over housing as they said my health didn't effect any of they're decisions as I'm not registered disabled so ended up having to stay with family but deffinately giving them a call in the morning too thankyou x
Sqeeshy I am so sorry u are facing these dificulties. I got a council house as soon as I found out that l was ill. With LUPUS its a disability straight away and u should be getting a full Disability benefit straight away coz u are not working. As for me I get theDisability living allowance as l want to work till l couldnt. Ask for A Tanancy support worker anyone facing difficulties with living can get help from them. Pliz try them
We all from time to time feel 'down' you sound as though it's gone on a long time for you. You don't say what your career field is, sometimes there are ways round jobs, taking lighter roles, going part time etc.
If your son is starting school in a few weeks, maybe you need to go and enjoy these weeks with him and make lovely memories. Once he starts school you can then think about which/what would be the best job for you. Some may say don't work, which is ok if that's what you want. I know myself personally I couldn't imagine not going to work.
You seem to be on an awful lot of drugs, some sound that they should be doing the same job? If you don't think they are doing any good I wouldn't wait to see the consultant but go and see the gp and ask their opinion on what the aim for each drug is and if it's worth reducing some of them. When I see the consultant and say I've a bit of pain he always wants to add another pill but then I ask why and after discussion I say I'm not ready to take another pill and it will be reviewed at next appointment. The last time I saw him he said I might need an operation on my hands!! I told him that's a last result and I'm not there yet (that's never gonna happen lol) have you been referred for hydrotherapy or any other therapy other than a pill? Sometimes these help a lot better than pills.
Todays a new day I hope it's a good one for you and we are all here to talk to.
I work with children a field I adore trained hard for and fond so rewarding and lifting on the bad days well I did until recently, apparently the gp said they can't interfere with a medication plan from rhumey as I'm not stable and it's still being adjusted they don't want to contradict don't know how true that is and if they can't help?? Have to admit it's the best rhumey iv probably ever had and keeps such a close eye and she listens to me which is more than I can say for some Iv seen over the years so I take that a slight comfort as I know some aren't so lucky but just feels like such a mess if that makes any sense x
Yes, it does make sense. Sometimes small jiggly things all come together and feels like a big weight on your a oilers and everyway you turn there's another obstacle to climb.
It probably true that the gp doesn't want to override the consultant and if you have one that you have confidence in I guess it's best to stick with them. I've heard quite a few people on hear saying that they opt for herbal therapy and how good it is. I personally have a massuage every 6 weeks, this helps keep me supple and not so many aches.
I too work with children and understand how you feel. It is a very rewarding job. I'm lucky that I have a head that is understanding if I'm having an 'off' week.
There been lots of good advice on here, I hope it's helped you. I love the fact everyone is supportive and you don't feel alone. X
So sorry you are having such a struggle. It seems a nightmare to have to juggle all those drugs yet you are not feeling much relief.
You have done wonderfully well looking after your wee boy whilst having such health problems.Now that he is going to school you will have more time to rest and I am sure he will be so excited to tell you all about his day when he comes home.
I appreciate you feel gutted about being not able to go back to the work you loved. I gave up my job over twelve years ago but I was ten years off retiral by then so it wasn't so bad.
As Misty has suggested it would be a good idea to see your local CAB for advice on benefits.I did that when I had to give up work and they were so kind and supportive.
Is there maybe a local Lupus group or Chronic Pain group that meet near you. I have a friend who gets massive help for one.
Problem for most of us is we are usually just to tired to go, but even if it were once a month. My local hospital pain clinic gave me details near me.
It is normal to feel overwhelmed at times and grieve for the kind of life and freedom we see in others who have who have their health. The ironic thing is that they probably don't appreciate it .
You will appreciate and value the special times and they are to be treasured . I am sure you wee boy is specially fortunate to have a Mum who loves him so much.
I hope you manage to find some part time work you enjoy and so hope your health becomes more tolerable. Maybe time to get your Rheumy to reassess your drugs.
Anyway good luck with it all and keep in touch, it helps us all to share with each other.
Thankyou for your kind words my boy is such a wonderful little boy and even notices if I'm having a bad day and will suggest staying in which I find so sweet and feel so proud for his compassion but at the same time feel so sorry for him as it's not his fault my body wants to contradict itself. .... hoping to find some work as I can't stand not working so probably not helping my self loathing right now hopefully things will pick up soon thankyou x
It is quite wonderful that your little boy understands so much at such a young age and I understand your feelings that he shouldn't have to concern himself about his Mums health. But in the end there is never any harm in that, he knows you love him and he is showing you his own love . The times when you are a wee bit better will have extra value as you can both do more together.
You are both so close to each other, and that is precious. X
I pit for u dear. I have been feeling like that until l read from here that if u take B12 daily in the morning and HP-5 at nite and Vitamin D Holland Barret it helps. I have been taking it for about 3wks. I am feeling much better. dont sleep on my sofa like l used too. I have been told not to work again by the RHUMY. I next week and l am looking forward to it as this keeps me away from my sofa all day thinking of my prob. The prob with u is u are on a lot of strong painkillers. they also make u tremple. I AM ON TRAMADOL WHICH I TAKE once a day when needed and paracetamol. It depends on doctors too. Me l do research before visiting my consultants
I do too was able to keep painkillers to a minimum until it started affecting the nerves down my back just such a pain in more ways than one then before to surgery only thing to have any sort of effect on the pain was morphine and since then been on and off the morphine and have to take my dailys or getting up is a sheer struggle been on the sofa myself through not being able to sleep and the stairs just seem like to much some nights heard good things about the supplements and am deffinately going to give it a try thankyou x
Just a thought, l am from Africa and l have also got a lot of African Herbal Medications from Africa (NATURAL HERBS) These have helped me quiet a lot as when diognises I was given months to live. Noone knew whether I will be here today. this has shocke everyone even my consultants. They call me "A LIVING MIRACLE) Dont get me wrong it is very expensive and very ugly tests but like l said anything not chemichally l do try it
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Flare up & fed up 
So fed up
Flaring and fed up
fed up and struggling to cope.
Gutted, fed up and disheartened
