Rosehip?

[Lulububs]

Does anyone use “rosehip” supplements ive been told there good for joints, inflammation, cartliage and muscles.

Just wandered if anyone was using this?

[cyberbarn]

I don't use it, but there is some weak to moderate research to say that it might work in osteoarthritis.

"Conclusions: There is moderate-quality evidence that R. canina improves pain and stiffness in people with OA with small effect sizes. Low-quality evidence suggests R. canina was not associated with serious adverse events. Generalisability of findings is restricted due to lack of bioequivalent active ingredients identified from varied rosehip prod- ucts. Additional well-designed large parallel group RCTs following the CONSORT herbal extension statement are warranted to evaluate R. canina against placebo evaluating effectiveness and safety outcome measures with long-term follow-up."

oarsijournal.com/article/S1...

also these three papers:

sciencedirect.com/science/a...

europepmc.org/abstract/med/...

onlinelibrary.wiley.com/doi...

So it might work for some people, but they don't know how much of that will be the placebo effect and how much will be down to an active ingredient which it appears they may not have figured out yet.

[gillianTS]

My mother has used them for years I think she believes they help but to be honest she is still has the inflammation in her joints etc. She and my sister also take turmeric capsules and use a paste too. I think you just have to try these supplements and see if they make a difference.

I was recently diagnosed with vitamin D deficiency and hoping this might improve my joints and muscles now I have started a supplement, I also use magnesium supplement for muscle cramps and take vitamins B znd C. My neurologist has now prescribed a low dose epilepsy drug to helo with head pressure and hopes this might help my tight muscles.

Good luck, Gillian

[Lulububs in reply to gillianTS]

Oh the tight muscles are a nightmare, i have had so many ops jaw, wrist, knee but the muscles cramps and the muscle tightness is by far the thing that is a every day occurance.

Between osteo, monthly sports massages , magnesium, yoga and pilates ive got everything else pretty much strong but i cant relax muscles esp in BUTT 😬lol.

I was just wandering with the rosehip, as u said u clutch at straws hoping something may help... i take vit d and c , magnesium, probiotics( ibs problems).

[gillianTS in reply to Lulububs]

Hi Lulububs

Not sure what magnesium you are taking or amount, I changed to magnesium citrate and take 400mg daily just before bed it has not stopped the tight muscles but has improved greatly the calf muscle cramps. I now take 4,000 iu of vitamin D and 2000mg of vitamin C and 2,000 iu of vitamin B12, high strength cranberry and D-mannose, the latter 2 because I used to have daily antibiotics for UTI's no longer have them now 😊

Got to agree with everything you have tried because you sound like you have tried exactly the same things as me 😏

I have a lot of pressure in my face and head, especially up the front of my face, nose, cheeks and forehead and into my skull but the skull bit changes sometimes the front or sides or back, along with tight shoulders, arms etc down to my feet... anyway I also have Behcet's and I have been recently being checked for Neuro Behcet's , I had head MRI which was ok so I kept on to my consultant to give me answers to the head pressure (previous consultant said brain fog which it definitely is no). Incidentally I also believe this pressure creates teeth chattering when I am resting and in bed, it is not noticeable but I can feel it when relaxed and it sometimes wakes me, I diagnosed with teeth clenching in 2014, not grinding just clenching when I'm asleep, so got fitted with mouth splint which has improved the sides and temples of my face and jaw, would not sleep with it now... anyway saw Neurologist told her all my symptoms including all over my body, I write down everything, my symptoms in as few words as possible headed in areas of my body, include things I have been diagnosed with and treated for as well as scans etc, she looked at this and told me she thinks I am suffering from migraine, I honestly did not believe her and she told me she knew I did mot believe her so she explained more and she sent me information afterwards. I also keep getting these bouts of sneezing and clear nasal fluid like water which can last around a week then the huge amounts of sneezing starts to cease and the fluid becomes less and the pressure in my face and head increases more, I've had the allergy tests and been put on allergy treatments by ENT but this didnt work... I do not have huge painful headaches, affected by bright lights, I often feel nauseous, anyway after Neurologist arranged for me to have a lumbar puncture and more blood tests the Neurologist now wants me to try daily migraine medication so I will start one today that's used in high doses for epilepsy, my GP thinks this might also help relax my muscles and improve my sleep... we will see how it goes.

How are you ankles, around the ankle bones and feet?

Hope I've not bored you to tears 😁

Gillian

[Lulububs in reply to gillianTS]

Ha no gillian to tell truth it nice speaking to someone that “ gets it” coz most people have no idea . I dont even tell my friends i have it coz prob bore them, hey we all got our probs so i dont moan.

I used to suffer alot with sinuscitis but since cutting down dairy and cutting out gluten that just went.

The jaw thing, nightmare, it was my first thing to go , first right side had op then 5 years later the left... the pain was awful.

They think it was all down to grinding teeth , i grind so hard i have worn teeth down at back and i keep my husband awake. I now have guards but i can physically chew my way through one every 3 months... my doctor thinks my dogs have been at it but no just me😂.

I do take amitripyline when muscle get to bad but i dont like taking any medication not even painkillers if poss.

Oh and the feet and ankles no probs but i do walk alot as in 5-6 miles a day so could b that there pretty strong? God knows

[gillianTS in reply to Lulububs]

You made me smile especially about your mouth splints being chewed by the dogs ha ha 😁

I too used to have amitriptyline took it for 9 years, in the end I came off it because all the GP wanted to do was continue increasing them but they did nothing for me in the end. I was offered them again in 2016 and again a few months ago but I had a horrible time coming off them so not going back there plus the fact they just mask the problem.

I think we have a few similar issues going on, it is good to chat 🙂 I try not to discuss with my family and friends about whats going on because it gets where it is the only topic of conversation them asking more and more questions its depressing, so I have again banned any conversation to do with anyones health 😊

I never had any issues with my ankles and feet until about 2015 then the tendon sheaths started to fill with fluid very painful. I used to walked twice daily my large dogs, go on walking holidays, swim, cycle, yoga, pilates I literally have had to give most of it up, nobody seems to know why it has happened to both feet and ankles and now the Neurologist is looking to see if it being caused through some neurological problems...

Anyway thanks for your message, I hope you can get some relief from rosehip.

[Saassii in reply to gillianTS]

The symptoms you describe here that "sound like allergy, but don't respond to antihistamines". Can I ask you which antihistamines you tried and for how long? Also are there any signs of mold or water damage at home or in your workplace? Or any areas that you go to that have large bacterial source? Or may be located near where you live, like a swamp, agricultural land etc?

[gillianTS in reply to Saassii]

Thanks for your message.

I have had lots of allergy testing, blood tests for lots of things and ENT decided to do more and camera into my sinus, next thing is CT scan. I have only been taking a very low dose epilepsy medication for the pressure in my face and head a few days and yet to see any results, likely to be increased when I speak to GP tomorrow.

Tried lots of different antihistamines, some daily for months, steroid sprays, nasal washes none really make any difference to the pressure in my face and head.

No mold or water damage, no swamps or bacterial sources around me, my husband is asthmatic so he's a great indicator for anything untoward like mold, this really affects him.

My episodes can start at any time of the year and at any time on the day or night, I can sneeze a few times a day/night or dozens and dozens and dozens, the watery mucus can start like a tap and then turn off just like that, it can go on for 5-7 days and just stops.

Like I said in my earlier note the Neurologist thinks I have migraine I will try out the medication and go from there and I am still under ENT I will see what they have to say when I next go.

[Saassii in reply to gillianTS]

That does really sound peculiar. Have you had a culture taken from your sinuses to see if anything is unusual?

Migraine is an interesting diagnoses. I guess it depends on the level of pain you're experiencing during the episodes. I found migraine to be debilitating and a horrifying level of pain. The way I was describing it, medical personnel looked for an aneurysm. Thank God there wasn't won't. Stopping all forms of artificial contraception stopped years of migraine. Who knew?

But the sneezing you're mentioning still sounds more reminiscent of an inhaled reaction than a purely neurological. Ultimately when mast cells degranulate one of the mediators released is histamine. Histamine is a neurotransmitter. So a person can very well have neurological disorders, but there'd be a more difficult to locate microbial source rather than something "just having gone wrong with a brain".

[gillianTS in reply to Saassii]

No I have not had any cultures taken, I suggested CSF leak along with a list of other conditions to my Neurologist which she quickly discounted, the ENT consultant wants to carry out CT scan as he feels the brain and head MRI will not provide him with what he would be looking for...

The sneezing can happen in my sleep or at any time, it might continue for 15 to 60 minutes and then abruptly stops, I have never suffered from allergies and I don't get anything like the people I know with hayfever I am quite normal it is just unexplainable to me at the moment and I am just looking for a plausible reason. They started suddenly so maybe they'll disappear suddenly 😊

The Neurologist did not describe my migraine in any way as a usual migraine, because I rarely get debilitating headaches, she described the pressure in my face and head along with the clear nasal water/mucus and simply felt the sneezing was a result of the watery mucus. She does not believe I have an allergy and yet ENT thinks I may have a sinus issue... I'll let them do whatever they need to do. Behcet's throws up lots of weird issues and I do know another lady who suffers with the same kind of thing which was eventually put down to a certain kind of migraine and she is treated with a similar drug to the one I have just started.

I have extensively researched these issues slong with my other main conditions EDS and Behcet's I have suggested several things to both Neurologist and ENT consultants all of which have been discounted so I have to now leave this up to the specialists to determine the cause and provide the treatment and stop guessing the reason.

[Saassii in reply to gillianTS]

Best wishes with the specialists. Do let us know how you get on and if you discover the trigger.

[Saassii in reply to gillianTS]

Take a look at this...

Causes

Behcet's disease might be an autoimmune disorder, which means the body's immune system mistakenly attacks some of its own healthy cells. It's likely that genetic and environmental factors play a role.

The signs and symptoms of Behcet's disease are considered to be due to inflammation of the blood vessels (vasculitis). The condition can involve arteries and veins of all sizes, damaging them throughout the body.

Several genes have been found to be associated with the disease. Some researchers believe a virus or bacterium can trigger Behcet's disease in people who have certain genes that make them susceptible to Behcet's.

That was just from Mayo Clinic, but clearly microbes like bacterium and virus are suspected as instigating triggers in genetically susceptible individuals.... hello EDS.

Sometimes sources for me (I have EDS, probably classical) are even common household drains. (This is only since a larger triggering event, I never used to be this way.) My mouth burns and if I don't keep them covered and hold my breath at sinks it will blister. Not quite the same outcome as you, but strangely similar. I cannot even do miniscule amounts of molds or bacterium on any fruit or vegetable or bam, blisters. It was one event that changed everything. It took about 28 days living in the house with a source, then everything changed.

So I'm just saying this to you to help get you thinking about possible events or other potential contributing factors if in any way that could assist to aide your discomfort. The reactions I have now are savage. I can't sit on an old couch with microbial activity in it. Now I know because of some peculiar things that make it understood. But you may not be feeling it instantly, but later the problem is there. I think it helps to make sense of stuff, it's smart too so you can improve and remedy stuff!! So I think your environment should be pristine with no clutter and you shouldn't do cleaning where possible and if you are only hepa filter vacuum or put respirator on etc. xx

[gillianTS in reply to Saassii]

I am a researcher and have extensively researched Behcet's but thank you, the condition has a great many associated conditions other than the ones routinely listed, having to manage oral and genital ulcers throughout your life is challenging let alone the added complications of the many eyes, muscle, joint, neurological and skin issues people have to deal with along with organs, abdominal, bowel etc etc the list is endless, some people are much worse than others and others seem to grow out of some of the symptoms they experience, medication is varied, I have immune suppressants, steroid and the new drug I am trying from Neurology but I have tried others.

The condition is rare in the UK and as such I only know about two other patient in my hospital region which covers nearly 3,500 square miles, specialists have little or absolutely no knowledge or experience, all I ever get asked is do you have ulcers... yes since the age of 15! My GP has been good and at least he admits peoples inexperience of the condition and realises I know much more than anyone at the practice he runs, not that I have wanted to but I have had to educate myself otherwise I would have continued to be left on a shelf with no label, the GP has taken time out to read up and learn more which I am thankful of. Sadly like EDS some specialists are dismissive which I believe is through ignorance and a lack of wanting to learn more.

[Saassii in reply to gillianTS]

You are so so right. I've tried to do the same as you, research, study and learn as fast as possible... That seems the best we can do!

[gillianTS in reply to Saassii]

Been doing this for years and still learning, I get reprimanded by many consultants but unless someone tells me what is going on then I will continue to research and ask questions because if I don't nobody else will...