Newbie on board

just want to say hello, and ask a general question really. does anyone suffer from sjogrens syndrome as well as fibromyalgia and if so what does your doctor treat you for more? i seem to be dealt with for my ss. but feel my pain meds should be for fibro... any advice would be nice ,,xxx

[TheAuthor]

Welcome to the forum and I sincerely hope that you find it 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 sorry to read that you have both Fibro and Sjogrens, and I genuinely hope that you can find some resolution and relief to these issues. I do not have Sjogrens myself but I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[Hidden]

Hi audh I was diagnosed with fibro March 14 and Sjorgens in Aug 14. My GP doesnt really seem to know what to do to help with the fibro and has prescribed tramadol (which I take carefully) and anti depressants (I believe some people find these help) and for the sjorgens he has given me eye drops. My Dentist was more interested that I have sjorgens as it can affect teeth and gums. He just said to make sure drink plenty and keep oral hygiene up. I find chewing gum helps a little and I always have a bottle of water nearby. My nasal passage seems to give me the most problems as it is always dry and gets ithchy. My eyes get gritty and dry but then pour with water but the drops seem to help this. Not sure if this helps. Gentle hugs Joolz.x

[Hidden in reply to Hidden]

I attend dental hospital for my teeth as it helps them to teach ... I go every 4 weeks with a break during exam and summer intake so don't go for about 12 weeks during summer months. I take venlafixine for depression and gabapentin for the pain . I also use the eye drops and yesterday I got a nasal spray .. What a relief not to be awake with a annoying cough all night or sniffing non stop lol ..... I wish u well and hope things change for u

[panda60]

I had a positive test for Sjogrens when I was diagnosed with Hughes Syndrome in 2001. Since then the diagnosis has been challenged but I have dry eyes, dry mouth, dry skin, and periodic swelling/infection in my salivary glands. I was prescribed Plaquenil which a lot of people respond well to. I am allergic so on another drug which immediately stopped the horrendous itching of dry skin on my arms.

When I had a flare up four years ago I was referred to the Sjogrens clinic at Guys hospital and they were really good. I had a week of high dose steroids which calmed my glands down and my GP can prescribe if needed again. They also prescribed some toothpaste and gels for my mouth. I have tried various eye drops and gels and always go for preservative free as my eyes don't itch so much.

I don't think there is a HU site but I'm sure there most be other support sites for more info.

[Hidden in reply to panda60]

My eyes drops are the ones u like panda60 ....a friend of mine who suffers badly from sjogrens has had chemo injections and then she is now on steroid injections and waiting to see if this helps .. So I count my blessings that all my pain and suffering never gets me to my friends state.. But would still like me to be better .. I admire people like her because she seems to cope a lot better than me but I think my depression has a lot to do with that .. Anyway good luck and hugs to u xx

[Hidden]

hi everyone . thanks for replies. i was diagnosed sjogrens but it was after constant pain that the gp said oh yeah your consultant thinks that you have fibro. so i got garbapentin. which only make me tired, when i get a sick line it says my fibro is causing health issues, but i dont get any tablets to help me sleep or relax my muscles for sleep that fibro friends get. it is so frustrating cos some nights my legs jump constantly or my body get pins and needles all over.

[Lotus954 in reply to Hidden]

I think you need to find a doctor who understands Fibro. You should be getting meds that will allow you to sleep because sleeplessness only brings on more pain. My doctor has me on daily Ultram for pain management and Trazodone for sleep. I have a supply of oxycodone (percocets) for occasional particularly bad flares if the Ultram isn't enough. Usually, one dose is enough to calm the flare down and end it. I also use sleep hypnosis on particularly rough nights. A lot of us get what we call "restless body syndrome". There is a discussion group here for that. If I catch it early enough, sometimes the hypnosis can relax me enough to keep it from blossoming into its full glory. As for the Sjogrens, a lot of us have it or have something that mimics it giving us dry mouth, eyes, skin, etc. For your mouth, try using Biotene products. There is toothpaste and mouthwash that help with it. I like Similisan eye drops for the eyes. It's natural, doesn't sting and does a great job lubricating. Coconut oil is good for the dry skin. These are just some of the things I personally use for the symptoms you have described. They work for me. Others on this board probably have other things that work for them. Try any and all of them until you are reasonably comfortable. You are in the right place. People here are very giving. Please, please, please find a doctor who knows how to treat fibromyalgia. The Fibromyalgia Network has a list of recommended doctors in most areas of the country. There are more, but this list is made up of the doctors that members have recommended. The best thing you can do for yourself is to get the right doctor. Best of luck to you. I hope all this has been of help to you in some way. Linda

[Hidden in reply to Lotus954]

I was diagnosed at first with sjogrens and then gp said it fibromyalgia.. I have changed doctors and this one doesn't get it either . I've spoke about my sleep my pain my memory loss confusion social anxiety noise everything and they say ah it related to ur fb but nothing gets done .. I eventually tonight broke down . I am not a weak person . I am the strongest stubborn independent person u could meet. And I know I have been getting worse and worse but tonight I actually broke down . I have now reached a point that u can't feel emotion. I feel I am standing outside my body and watching everything and having no control over emotion or thought .. I feel hollow and empty .. I feel I have no life and my body is in auto pilot .. This is the worst I have ever been ..but even now writing this I don't feel anything ..

[Lotus954 in reply to Hidden]

You are suffering from the depression that often accompanies fibromyalgia. The medications that knowledgeable doctors prescribe are usually the following: 1) pain management, 2) sleep help and 3) depression. Of course you aren't a weak person. This condition can knock even the strongest person to his/her knees. It is so pervasive and constant. Once you get your meds regulated, you will have your life back. You will still have to deal with stuff that pops up, but for the most part, you will be able to have a life. Your sense of humor will return. Enjoyment of life will return. You just need to find the right doctor. Obviously, the one you have isn't the one. Doctor shop until you find one that knows about fibromyalgia and takes it seriously. Please don't give up hope. And don't sit around doing nothing about it. Go out and get a decent fibro doctor. I'm here for you and so is everyone on these message boards. Use us. We have all been where you are. It took them 5 years to diagnose my fibro. Until that time, every doctor told me it was in my head because nothing was wrong. And then the right doctor came into my life, and my whole life changed.

[Hidden in reply to Hidden]

I read with interest the answers you were given as I too feel like you that nothing gets done and I feel like I am living in someone else's body in pain and looking out screaming Im here and no one can hear me. I just want to scream at the top of my voice but feel locked in and kind of numb to everything around me. Kind of like the vacancies my son used to have as a child when he had childhood epilepsy. He would just sit looking blank and when I asked him if he was ok he would say he didnt know who he was or where he was. I changed my GP surgery 2 years ago and the GP I was registered with understood fibro but left the surgery and I have since had 2 different GPs who have also left and now I nearly always see a locum. Gentle hugs Joolz.x

[Hidden in reply to Hidden]

I wish you luck in finding a fibro doctor. My surgery is newish to me and I used to see same doc and u felt he wasn't listening so started to see a new one and he has turned the same. But my daughter phoned and said my mum is not leaving house she cries constantly she hates everyone and is shutting herself away so my usual doc referred her to the doc (lady) to see that afternoon . She hopefully won't let me down , and has said she understands too well what I am going through and will help,.... Big hugs to you as I know exactly how u feel ... Xxx