Hi everyone,
I am new here, and am delighted to find such a supportive (a busy forum!).
This might be long so I apologise, but want you to understand the background. I have had hashimotos for 20 years. More recently (5 yrs ago) I was diagnosed with dry eyes via a shirmer test with 0 in both eyes, after my eyelids were sticking to my eyes in sleep and pulling the surface off. Alongside this I have had a myriad of other symptoms including: severe headaches, joint pain and swelling, and fatigue. Also have had lots of days when all day my bones ache - just like they do when you have flu.
After some pushing from me, this led me to the rheumatologist, who ran some blood tests which came up negative (these were things like dsdna and ro and la). My ana was mildly +ve @80 but apparently this can happen with hashimoto anyway. As I had at that time lots of sore swollen joints he said it was likely to be sjogrens secondary to something else undiagnosed. He put me on plaquenil and looking back, when it had kicked in and I was still on 400 it was working I felt much better. When they dropped me to 200 it all came back, so he bumped me back up to 400. I was waiting for this to build when I started having problems with my muscles.
I have weakness and mild occasional spasms pain and constant twitching. Plaquenil can sometimes cause this apparently so I was taken off that. Fast forward a bit and there have been suggestions of psoriatic arthritis, of myasthenia gravis, all of which have come to nothing. My muscle twitches have been documented by EMG and no cause (eg antibodies ) have been found. My latest neuro appt ended with him telling me I am anxious ( I am not - just stressed by trying to survive life feeling like this no help from him or his colleagues - in fact my job involves helping anxious or depressed people so I should be able to recognise it! Lol and besides when I feel better life is great!)
I saw the rheumatologist recently and he has sent me off for some more bloods most have which have comeback -ve ( still waiting for last one or two) and he has now said to me that sometimes tear glands just pack up (I am 36). So now he doesn't even suspect sjogrens. And he won't put me back n plaquenil - the one drug which helped, because f the muscles problems that the neuro says is anxiety - grrrr.
Anyway. I am desperately trying to get some answers in order to get some treatment/ help. I am running my own business and have a young daughter, so am having to keep going through all of this, and it is so hard, and feeling so unwell and in pain all the time means that i tend to be grumpy with my family and it's not fair.
To add to my problems, I moved out of my gp practice area 9mos ago, and they very kindly let me stay n while this got sorted, but f course it isn't sorted, and so I am having to leave and find a new GP who doesn't know me from Adam and might not be as helpful as my current one is.
So to get to my question, what is my next step? Does it sound like sjogrens, or anxiety or lupus (which my gp thinks it is), and is it worth me paying a different consultant to see me - maybe a specialist in sjgrens or luous? Can I refer myself? Are there any ways I can bring back control for myself?
I can feel my frustration starting to leak into my words so sorry if this turned into a rant, I am sure many of you have already been where I am now and now how I feel...
Thanks for listening (reading!).
Leah
Hi Deserteyes! (Love the name)
Welcome! I am sure you will get a lot of answers here! This forum is wonderful with amazing, supportive people who 'get it'. It is so hard to get a dx from the doctors many times. Your present GP could prescribe the Plaquenil too... I would make sure you take your records and maybe your GP will dictate a letter specific to your issues to take to a new dr. I would find a new rheummy and see if you can get treatment based on your symptoms. Many here are completely seronegative and have had to find a doctor to treat the symptoms... It is hard but worth it.
Good luck on your journey to a normal life. It is one we all are doing too! It is possible!!!!! Maybe try some yoga or something to help the muscles but also the grumpy days... meditation too helps... we all have it and at least you recognize it is a problem for you and others. :)
Use the search button above to look up lots of info. Read what you can.... it will help you with your questions and comments with the doctors too.
Hugs!
Gayle
I'm not sure where you are from, so I'm not sure what your options are in regard to "recommending" yourself - too, your insurance may not allow that. Speaking of insurance, I'm sure they have a list of drs. you can see in your area that you can call before you schedule to see if they have experience with SJS.
If the plaquenil hurt you, you may want to look at alternate meds - the search here can help with experiences of these folks on those.
Keeping up with life can be difficult. I've had to modify my life quite a bit to keep working, so the best I can suggest there is to simplify, simplify, simplify.
Yoga is good, but it takes me days to recover. I won't stop it though, it does make me stronger.
Get some knowledge on stress managment and try and practice it as best you can.
Finding a good, supportive dr. is essential. It may take going thru some toads, but keep up the good fight until you found someone you can be confident in and helps you manage this disease.
Good luck! and welcome!
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Welcome to the board, and we are here to help, listen to rants, and pass on information. We encourage each other, and we do understand how difficult it can be dealing with these type of disorders.
It is true that you may need to continue checking out doctors until you find one that is willing to be open minded, and really listen to you, and treat your symptoms.
Some of us have positive test results, others don't, and that is quite common. I don't know why that is the case.
I went to one Rhuematologist for 5 years, and really liked him, and that after I had to retire early as a teacher, I had to find another one. I didn't like that at first, but found out it was for the best, because he ordered more intensive tests, and that is how I found out I also have lupus.
I said a prayer for you to be able to find out what you need, and to feel better.
susanep :)
Hi deserteyes:
I am new here as well and also have Hashi?s (w/sicca symptoms among others) and have or had similar symptoms to yours.
You should perhaps readily pursue obtaining a new GP so you are under care and can continue treatment as necessary. Research the doctors in your area and health plan online for ratings, if possible. I do consult with a rheumy who is not in my health plan and pay her out of pocket and my GP abides by her recommendations, however this can be a problem in emergency situations (yeah there have been a few of those or when she is out of the country, so I am now being referred to rheumy in my plan but will still consult with her because she has been fantastic). If you haven?t already I suggest typing up an accurate but succinct history of your symptoms and treatment in chronological order that you can print out and hand to any new doctor (from gp to specialist) for their reference and file.
Also, I wouldn?t draw a conclusion from one Schirmer test, as I was informed by eye doc, one test is just a snapshot on any one given day; was Rheumatoid Factor included in your blood work, if not you may want to request it in the future. It can be elevated in RA, Sjogren?s and Lupus.
I often wonder what is attributable to Hashi?s only and I drive myself nuts. Suffice to say, there is a lot of overlap and exacerbation and the symptoms are what they are, so treating the symptoms to have relief and some quality of life is foremost. Are you able to take Advil or similar OTC med. I can no longer tolerate ibuprofen, aspirin or regular course antibiotics, but I used to be able to get some relief from Advil liquid gel caps and similar for the joint pain and headaches. You may already be using them but the OTC eye drops such as Systane, Blink, etc. while more expensive provide some relief. Regular sleep helps my muscle twitching waves and often I have to take a half xanex to ensure that happens if I am not able to sleep well on my own. Were you experiencing any of that before taking the Plaquenil?
Unfortunately anxiety and stress still seem to be fall backs for doctors who are unable to readily have positive standard test results to explain symptoms. These diseases are still poorly understood and I think many docs feel better when they can provide a ?reason.? I don?t like hearing it and I have over the years many times. I?m with you when I am feeling better there is no stress and anxiety. The mind and spirit are willing, the body hmm another story?.. and after some time that can def affect mood and outlook, but the reason, probably not, just a another symptom and /or exacerbation of the underlying condition.
Hoping you find a good new doc and some relief. Hang in there and take good care, Dee
Welcome!! :)
Just a thought... Hashimoto's is associated with Celiac disease in many cases. So have you tried going completely gluten free? It will also help muscle pain, fatigue, etc.
We're glad to have you aboard! I hope you find the answers you need!
Welcome to the site. Lots of great people here and lots of info.
First of all, if you have Hashimotos it is entirely possible that you have sjogrens.They run together like twins many times. Also, you can have seronegative Sjogrens and you can have seronegative Myasthenia gravis. With MG the acetylcholine test can be negative and you can still have the MG> The other test that is often done is the antistriated muscle antibodies--this is a test that is part of the acetylcholine but more in depth.
I have Hashimotos, Sjogrens and Myastheni gravis, bullous pemphigoid (skin), asthma and severely low t-cells.
I have not felt well since I was about 20 and didn't get diagnosed with sjogrens until I was 60 in 2003. THe Hashimotos and MG diagnosis came in 2006 along with the low t-cells diagnosis. My first identified autoimmune disease was the bullous pemphigoid in 2002. The deal is, if you have one autoimmune disease that is diagnosed the other diagnosis should be easier to come by. The proof of autoimmune is in your Hashimotos diagnosis.
The sjogrens has lot of symptoms that are very hard to pin point, but if you journal and keep track of your issues the doctors should be more apt to listen to you. (I say this with tongue in cheek). As far as the MG goes, do you have trouble holding a hair dryer to dry your hair, lifting heavy pans off the burners of the stove, have lots of aching in your arms and legs, twitches in your muscles that come and go? I have had all of the above plus trouble getting out of a bath tub. I developed the droopy eyelid in one eye in 2006 and I thought it was just that I was getting more fat in my eyelids.
The other problems that I had was asthma---at least I thought it was. Many times I would feel like I was going to quit breathing and found out later that I was having involvement of my diaphram. The diaphram is a muscle that can become paralyzed with MG causing us to go into respiratory failure or arrest. When I would use my inhalers and lay down and rest I would get better. Turns out that is what helped the MG also. No doctor ever looked at me and asked me why I felt like I would stop breathing.
I would go to a neuerologist and check about the MG diagnosis. You just might get the sjogrens diagnosed also while you are there. It is extremely common to have Hashimotos, Sjogrens and myasthenia gravis at the same time. Also, if you don't have MG it is possible that the muscle aching, etc is from some other AID or from the Hashimotos. I found out that Hashimotos can really wreck havoc on the body--even the joint.
Don't let the doctors pull the tension, depression angle on you. When a person has autoimmune they are high risk for depression and usually need medication to help with the pain and sleep issues. This is part of the autoimmune disease process. Be adamant about getting diagnosed. I had to work very hard getting my diagnosis and sometimes I was so discouraged I thought I would quit.
I would take a few weeks off from the intensity of shopping for doctors, etc and rest more and then go back to running down doctors who could help. I ended up in many different places and had many other health issues along the way. My ENT was the one who got me to my good immunologist who figured it all out. The first office call he looked at me and told me I had MG just by my physical symptoms. When the testing came back,(antistriated muscle antibodies along with my symptoms) he finalized the diagnosis and put me on IVIG as I can't take the strong meds due to my low t-cells. Good luck. Irish
There are other drugs that cause muscle twitches. Neurontin is one that caused them for my husband. It depletes magnesium, and hence the twitching. He supplements with magnesium and that solved the problem. (Too much Mg gives you the runs, though.)
Ask your doctor about this. Sharon
The American College of Rheumatology
Here is a link for finding member Drs by geo location....perhaps you can work backwards finding a Rheum who can refer you to a GP and Neuro who specializes, has interest/knowledge in SJS?
http://www.rheumatology.org/directory/geo.asp
Wow!
I left my post because we have been at a wedding and I thought that it would take a while to get some replies, and look what I came back to! I was so surprised to have so many helpful replies!
It is interesting that yu mention MG Irish, because actually one of the reasons they find the twitching on EMG was because they were looking to see if I had MG. I don't think I do now, I think that my weakness is my muscles being tired because they are constantly firing, although I do have trouble holding things like a hair dryer above my head, and I have been known to just suddenly drop stuff. The neurologist has basically said I have been thoroughly investigated and nothing wrong with me so can't go down that avenue any more.
It was interesting to hear about magnesium helping you husbands muscles Siccom, perhaps I need to try some of that.
I probably should have said in the first post that I am in the UK so I do not have insurance. However I am considering paying to see someone, although based on my experience so far I am concerned about doing this in case it is a waste of money and I end up still in this same situation.
I have tried going gluten free for a couple of months, and I am not sure if it helped or not. I did have an improvement in generally feeling well at first but then had a huge relapse - and as this tends to follow an up and down course it was difficult to tell whether it actually had made a difference. I am toying with taking all grains out of my diet, but haven't had the courage to do it yet.
I have been managing the pain/aching with paracetamol and codeine if needed, and keep myself comfy with eye drops. Have noticed that the codeine dries up my mouth (which isn't too bad usually).
Does anyone have any recommendations of good sjogrens rheumies in the uk who will see private patients?
Thanks
Hi Leah :)
Welcome to Sjogren's world. I'm in the UK too. I'm sorry - I don't know of any good, private rheumies though but I'm familiar with the 'it's all in your head' line! I see a ood rheumy now but I'm up in the north of England and I have no idea whether he ever sees private patients. I have a Sjoggie friend in London and I think she goes to one of the teaching hospitals there.
If you ever want to talk in 'real time' there is a hosted Sjogrensworld chat on Wednesdays at 7p.m. GMT.
Take care - Scottie :)
Hi Deserteyes,
Welcome to the forum! I haven't been diagnosed with Sjogren's, but have a lot of the symptoms. I'm on the path now to seeing a doctor not for Sjogren's, but for Lyme disease. It has a lot of the same symptoms as Sjogren's. With your muscle twitching, it may not hurt to research it. I'm not sure how common that is in the UK...
Thanks,
Susan
Hi Desert Eyes, I am in the UK too. not the best place to be with SS !
Iam sure that St Thomas hospital in London has a special department for SS.
Try google for any info on this. Let us know if your successful. Good Luck, and welcome.
Dolly
I. am not surprised. I have had so many problems that started after starting plaquenil. I am starting some herbssuggested by a Dr. Of Chinese medicine. It is just new so I will hav e to see. GingerTumeric coq10 fish oil and I Take b12 sublinbgual and K and D3. My levels were tested and all were too low. I am off plaque for 3days now and feeling better
.
Hi Deserteyes! I am actually angry FOR you! I have been through heck beginning 30 years ago BEFORE I finally found a GREAT doctor that diagnosed my Lupus. I was before that time, even thrown OUT OF EMERGENCY ROOMS, being told they were for sick people!!!
OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Do you know even recently while I was waiting for my new Rheumy to come on board (mine retired because of ill health) I saw an endocrinologist because I could NOT STAND my intolerance to the heat and always feeling like I would have this spontaneous combustion!! I swear to God! _HE_ WANTED TO PUT ME ON AN ANTIDEPRESSANT BECAUSE _HE_ DECIDED I MUST BE ANXIOUS BECAUSE _HE_ HAD NO ANSWERS AND COULD NOT ADMIT THAT.!!!!!!!!!!!!!!!!!!!
FINALLY MY NEW RHEUMY IS ON BOARD AND EXPLAINED THINGS TO THE TEE FOR ME AND THE WONDERFUL FOLKS HERE AT THIS FORUM KEPT ME GOING.!!!
IF you don't do anything BUT this, please, please NEVER GIVE UP ON YOURSELF! Never EVER blame your health on "anxiety." Sure, anxiety can make matters worse. Sure it can exaccerbate our symptoms and it is not wonder we have anxiety with all that we deal with. BUT getting to the root of the problem can be a matter of life and death and at the very least, quality of life.
I just am so sorry for the ignorance that still exists out there and YES even within the medical professionals!!!
Please again, do NOT give up. WE are HERE FOR YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Eventually you will get help. I am just so sorry for the "journey" sometimes. It is not without pain, and or fear, that is for sure.
(((Hugs))))
Hope you will stick with us, and WELCOME TO OUR FAMILY HERE!~!!
EllaBlue
If you contact the British Sjogren's Syndrome Association (BSSA) helpline, they will give you details of the best doctors. 0121 478 1133.
Kathyx
Hi all,
I am so grateful to have found you all here... I already feel so welcome and supported, thank you, sincerely.
I am going to have to get used to how quickly people reply and make sure I come back sooner to respond, so sorry for not noticing I had more replies...
Thanks so much Ella, that was such a lovely message, it is so frustrating isn't it? You know they are telling you you are anxious, and if you disagree or get upset - well that confirms you are anxious, overwrought, highly strung!
Thanks Kathy, that number is very helpful, I will give them a call on Monday afternoon and let you know how I get on.
Thanks again, and have a lovely weekend,
Leah x
Ps been experiencing mild double vision, so have been going through a bit of a palavah trying to use contact lenses to see if my eyes will marry up and the hospital optician finally agreed that there it would be too dangerous to continue with my exceptionally dry eyes - because when I arrived to have him remove them yesterday, they were completely stuck to my cornea! He had never seen that before and was a bit shocked. He said he would have a chat with the consultant about where to go next. Hopefully the message will get through to my ophthalmologist that this is not just a "bit of dryness" and get me some help!