Lupus Forum - Lupus , fibro or MG ?

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Q: Lupus , fibro or MG ?

asked by: angelsam75 on April 25th, 2009

New User

Hi All,

I am new here and i am having such a tough time, i am a 34 yr old mother of 3 kids all under 10 and i am a single parent sine August 2008.

Please can you try and give me some advise, i have an array of symptoms they all started in Jan 2007, weak muscles, tired aching joints and muscles then in May 2007 i had what i thought was a virus it was like the worse flu i ever had i could not lift my arm to feed myself my whole body deeply ached and i had all over body spasms, i was given a MRI and spinal bloke as they thought i had MS but when it came back clear the neurologist refereed me to a rheumatologist who said he didnt know what was up, i was tested for rheumatiod artheritis and thyroid and both came back negartive and i was discharged.

I saw a private rheumy who said he thought i had fibromyalgia and started to treat me, but i feel i have something else or been misdiagnosed my symptoms now are- weakness in limbs and fatiuged like i have never felt before i cant even lift my head for they feel like led, i have heavy eyes my jaw aches when i eat i have swallowing issues and weak voice, i get deep pain in what feels like my bones this comes in bouts, i get low grade fevers, a rash that looks like i have burned but only on my nose and checks and the pores look open and scaley if that makes sense, i get ill after being in the sun for a short time like sun stoke even in april sun when i used to spend hours in the sun.

Do you have to have the rash when your ill? or does the rash come separate from a flare? my rash only last 24-72 hrs at most its not there all the time although the skin is different over that area the pores and scaley skin can be seen if closely looked at and the sun always brings it out.

I have small amount of hair loss but i dont get sick at all and i know that is a sign of lupus i get tummy issues but they say there IBS.

Can you help please i am ill in bed this weekend again in achy flu like pain that wont go and i have my fenntanal patches on 100 but nothing is touching this pain life seems so bleak at the moment, i am due to see a neurologist in May as some symptoms like the leg weakness and heavy drooping eyes and led like feeling in limbs is simular to MG but with MG you dont get pain but that could be the fibro and i have something else on top.

Sam

Replies(29)

kdlee

replied on May 26th, 2009

Supporter

Morning again

From above it does sound alot like Fibromyalgia..I have been diagnosed iwth this for years..A new drug is out called Savella..I am on day 12 and energy level is up but everything else is same..

angelsam75

replied on May 26th, 2009

New User

kdlee

Hi how long have you had fibromyalgia? what other autoimmune disorders do you have? i've not heard of this drug savella i get so fatigued i could do with something that helps with that but my GP does not think fibro exsist i do see a rheumy up in guys hospital who is an expert in his field but i only get to see him once a yr its crazy.

sam

kdlee

replied on May 26th, 2009

Supporter

Sam

I have had Fibromyalgia for over 15 years now..I also have Hashimotoes-Thyroid problems, osteoarthritis,Sjorgens, Raynauds, disc disease,keratoconus,bakers cyst right knee, I am bordering Lupus and MS..My MRI shows a few white spots but nothing like what is expected for MS so they say for now not MS..That's ok as long as I know what is going on I can cope-besides I have anough going on..

If your Rheumy only sees you once a year-call and leave a message telling him that you want this called into your pharmacy and leave that number..There is no excuse for them not to help....

I take all thes meds..
REQUIP 2 MG 1BID
Methotrexate 25mg 2 tab wkly
Folic Acid 1 mg.
SYNTHORID 100 MCG
OXYTROL Patch 3.9 mg/day 2X wkly 5/11 start
SKELAXIN 800 MG 1 BID
Savella 50 mg. BID
LORTAB 500 1 BID as needed
EVOXAC 30 MG 1 BID
PLAQUENIL 200 MG 1 BID
FORTICAL NOSE SPRAY 1 QD
LIDODERM PATCH 1-2 Q 12 HRS.
OTC EYE OINTMENT AT BEDTIME,SURGERY (A MUST)
I would just as soon not have to take anything but without the medicense I cannot function..Unfortuantely I am very sensitive to meds so it is hard to predict what will work for me and for how long..I have been on many many many meds and even had one doc say he couldn't do anything for me..Needless to say I saw a Rheumatologist that cares and took everything into consdieration just as I was flaring bad..After a year of being in his care I began the Methotrexate and Folic acid-all low dose but still very strong medicenes..

angelsam75

replied on May 28th, 2009

New User

kdlee

Wow and i moan about my illness you are one strong person!!

I tried requip and miripexin and it did no good i tried lyrica no good put on weight tried tamazapam,diazapam,clonazapam,quinine sulphate,magnesium,lidocaine triggar point injections,many different other therapy's like a oestopath,chriopractor,acunpuncher,massage ,hydrotherapy and i am on fentanal patches 100 change every 72 hrs and sertraline 50 mg nothing seems to help i'll be ok one day and not the next the most recent sx is a huge numb patch been there for 2 mths grown from my thumb nail to a dinner plate it is permanant numb but round the edges of it after exercise and laying on it i get alot of pain tingling burning and it is hypersensitive to the touch.

i have photo sensitivity and rhaynards syndrome in hands and feet and IBS, i get a rash over my checks that is worse by sun but i have been tested 2 and abit yrs ago and it was negative.

dr has refered me to a neuromuscular specialist in queens square london so maybe they will be able to help.

how bad has your fibro gotten before i have been in bed and not been able to lift my head or eat for 2 mths before had loads of kidney and urine infections though that has gotten better i am trying hydro again but suffered so much last time but gone private this time and this physio seems to know about fibro i think i do have fibro but i also am sure i have something else i have been tested for my thyroid and nothing, i found being on too many meds at once caused more sx then help am worried i have been on high dose of narcotics for nearly 2 yrs but cant bear the pain without them.

sam

kdlee

replied on May 30th, 2009

Supporter

Hey Sam--yesterday I had bladder surgery and was on and off computer but didn't see your post--sorry..

If I do not have my requip my legs would not be still it's like they want to jerk and feellike bugs--ugh--I am wondering if I may be on the verge of Pakinsons..My dad has this and I see some semblance in me as well..One day at a time on that.

I forgot to mention I tired the fentenal pacthces I have two boxes that I cna't use--they make me so ill.I stay nauseated anyways and the patch made it worse..

I use Lidoderm patches that numb areas for a period of up to 12 hrs.then have to be without the patch for a 12 hr period..It does help for the surface pain..

I think the neurologist will certainly be a big help to you..

So where are you located--you said dsoc is in Queens Square London..I love this site..People from all over talking it's great..

I have toa dmit I take little pain medicene because I can't functin with it and if I don't move I can't function wihtout it..So, I force myself to move..I will in all likely hood go for a second trial of a pain pump placed in the spinal canal..The first time I tried it I got a 24 hr. spinal headache that was horrendous and the trial had to end witha blood patch and that helped..They take blood from you and place the blood at the spinal site of trial to close up area..works, thankfully..

Please keep me updated..KD

angelsam75

replied on May 31st, 2009

New User

Hi KD

Wow you sure have enough to cope with my grandad had parkinsons from a young age and my friend tim is 40 and he has had it 5 yrs already its sad,i cant tolerate any dopamine agonist, they say requip is great for restless leg syndrome my mum had that and i have that but lesser degree then you but i have had bouts when it was really bad and also it effected my arms as well, i had alot of spasms still do at times. I live in the UK about an hour and half from london a very small village. My auntie has a spnial block she has put in from time to time. What do you get pain from is it the thyroid or the fact your border lupus MS why wont they dx you with either?? you could get treatment then, i feel i have MS as well as fibro or some other auto immune disorder. I have been in so much pain the numb patch around the side now is getting bigger its on my hip/buttock and its hyper sensitive around the edge like hot pokers being driven into me i cant have my clothes touch it and down the same side the left it is having nerve pain in certain areas i used to be on lyrica (anticonvalsant) for the nerve but i put on weight so came off it plus it made me loopy mentally but if this carries on i'll have to go back to drs as i was in tears last night cant even walk on it i took 10 mg of diazapam not great with those patches and i dont like diazapam makes me depressed but didnt know what else to do. I had a LP a while ago and i heard you can get a spinal headache from that poor you that must of been hell i hope it wont happen again, what was the bladder op for?? you must be in alot of pain, i used to have liocaine injections but they never really worked i like the sound of those patches though you use specailly now for this hypersensitive nerve pain i am getting i have been offered lidocaine Infusions (in the vein )for 3 days in hospital it gives up too 4-6 weeks relief before the pain comes back.

Anyway take care and keep in touch.

sam

kdlee

replied on June 4th, 2009

Supporter

Morning angelsam-,Sorry I missed this post...
I am not so sure I could lidocaine infusions..It alone sounds like pain and to have to do it every few weeks..I want something that treats the symptoms-but it's not out there right yet..

The Savella continues to give me energy..I am on the Methtrexate and just maybe it'll kick in soon and I will be able to see a difference..I hate being on it though as it is a posion in itelf..

I do think I will go back for the pain pump and give it a last try --if insurnace will help eme with it..The lidocaine patches do help with surface stuffas long as you have no problems with tape..

Your village sounds really nice..You said it is small..DO you have stores around you or do you have to drive a distance to even get groceries?

timeisshort

replied on June 4th, 2009

Experienced User

Hi kdlee & sam, i don't suppose either of you have read my posts? i have been dealing with all the symptoms you talk about & am having success with them. I have asister with lupus & fibromialgia, another sister with MS, & my mother has parkinsons The only difference is i have been researching for myself the true cause of these diseases & one common ground is mineral balance. if you would like to know more id be happy to tell you but i don't want to be pushy you both have enough to deal with . I just believe through the success i have had that maybe it could help others like yourselves.

Users who thank timeisshort for this post: kdlee

angelsam75

replied on June 4th, 2009

New User

Hi Kdlee and timeishort

kdlee

No shops in my village there is a garage and thats its, the next village on which is a 4 mile drive has all small shops in it and that is where my drs is and where i go to the chemist, my 3 kids go to a school in another village the other way and that is 4 miles too but that has the same, its 10 miles to a supermarket and nearest town, i get my food shopping delivered each week.I looked the savella up but did not like the side effects i have to be careful as i had a pshycosis episode on taking a dopimine agonist and anything that talks about depression or mood swings i try and stay away from although i am on a antidepressant and fenntanal patches which can cause mood swings but both drugs are ok on me,diazapam makes me very depressed too.

timeisshort

i have changed my diet to a ph balanced one and have added minerals and vit to my diet and am aware of the impotance of minerals and vit in our system thank you timeisshort.

sam

angelsam75

replied on June 4th, 2009

New User

kdlee

replied on June 4th, 2009

Supporter

Hi hon..Like you I have to watch my diet and I do get in the minerals my body requries..I agreewith timeishort that we must have the right minerals..Will talk with her more as well..

I can't use the phentanyl patches as i get so nauseated..Alrady am and the patches makes it worse..Sorry the svella want be for you..RIght now it is helping me..Problem I have begun to ahve is I am now sweating profusely..I am somone who did not sweat and would turn purple after being outside a short time..Now water runs off me..Not sure what that's all about yet..

I know I will be having a swallow test again soon as food gets stuck and comes back up pretty quick..TOday I took a drinkof cold coke and as soon as it hit the back of my throat my throat spasmed..Painful!

Your village stil sounds nice to me..You have 3 kids-how old are they? My son is 34 and grandson is 6.5 years..We live in a small town on the outskirts really on some old farm land turned into a subdivision..Our home is a berm home built partially into the hill..The way we are situated we are out of everyones view which makes it nice..I'm not antisocial but I do like privacy..For us stores are 5 miles one way and 10 the other..We are on a country road..We call the chemist the Drug Store or Pharmacy here..
kd

timeisshort

replied on June 4th, 2009

Experienced User

sorry if i dissapoint but i'm male but am happy to share with anyone who wants to know.No offence taken!
We are worlds apart & yet how small is this world.
I'm in Australia!

timeisshort

replied on June 8th, 2009

Experienced User

angelsam75 are you confident you have the correct minerals etc for your system & symptoms.

angelsam75

replied on June 8th, 2009

New User

Kdlee

I have a painful lump in my throat all the time some worst then others but more when i swallow and sometimes i cant swallow or spit or liquid will slip down before i realise and i start coughing i am always clearing my throat too as i feel there is something there i have been to a ENT to see if its a sinus problem but he said its not.

Wow your home sounds amazing, you sure have alot going on i hope your swallow test goes well. The dr gave me some anti-inflammortries as my back is in spasms and i have a slipped disk cant remember if i posted you on this so sorry if i repeat myself he feels the left sided numbness is not from the slipped disk that happened at the weekend he did mention addison disorder due to my pigmantation of skin but thinks it best left to the consultant in london to sort things out. I had a flare on the way i started yawning excessivly my tummy muscle burned then my arms and legs burn and go weak and then my neck i need to lay down when this happens odd thin was the tablets he gave me helped abit with the flare, i have researched alot i have been thinking maybe its polymyosistis i'll list some sx and see what you think

weak limbs
flare like i discribed wit yawning and burning muscles
nerve pain
numb patch on left side/hip/buttock
sunsensitive-pigmantation/blsiters
ulcers from time to time in mouth
rash over checks and nose in winter and summer skin more hard on there not present at moment
cant get out of chair or do stairs
muscle pain in thighs and spasm
sensitive skin/hyper sensitive painful
loss of appeatite
stomach problems

any ideas??

Timeisshort

I have been on mineral and vit supplements and a ph diet but i would take any advise you give me so pleas either pm me or email me or post here anything to help i will try, i've tried gluten free diet meat free only thing i have not excluded is diary foods.

sam

kdlee

replied on June 8th, 2009

Supporter

Hi, I read what you wrote and then about the polymyosistis-I wish it were easy to say hey this sounds right on target..It does in some ways don't it?..Amazing what this autoimmune stuff can do and how all the symptoms can be so similar..Connective tissue disease applies to a great many autoimmunes..I do hope you get answers soon..

I think all of us with the autoimmune stuff try ruling out the same things..Foods, vitamins, minerals,breads, dairy..

I gotta get with the doctor to see when the swallowing test is to be done..

I stopped in today to see my Rheum. but he was out..I have gone from someone who does not sweat litterally to somone water drops off of..My nose drips like crazy, pain is increasing and my cough is dryer..I an think I am having an alergic reation to the Methotrexate..Suppose to hear from the doc by tommorrow..kd

angelsam75

replied on June 9th, 2009

New User

Hi Kdlee

Thanks for looking i know you cant tell me what i have but you do have alot of experience and i value your opinion so thanks for looking.

I think i would not care much but it effects every part of my life i cant work anymore cant be a wife anymore hence why he left!! and being a mother and being sick is draining i have carers come in and feed my children clean my house and i am stuck in bed or house bound most of the time i do get out once a week to hydro or if i am very well house group and church, i really hope they find what is wrong and it is treatable and i can get my life back, i am 34 this is being going on 2 yrs my kids are 11,8 and 7.

I get excessive sweating from my fenntnal patches used to be so bad when i was also on requip i had to change my night stuff 4 times in the night, i still sweat know but not as bad i change maybe once a night if that and sweat less during the day so it was the requip that caused it the most but it is a side effect of the patches too well thats what i put it down too.

what is the methotrexate for is it a drug? and is it new? let us know what the dr says.

Hope you dont mind us keep chatting your help has been great.

sam

kdlee

replied on June 9th, 2009

Supporter

Honey I want to chat and learn..It helps me as well..And I thank you for your kind words..

Methotrexate is a cancer/arthritis immuosepresant drug..If it works it is very powerful and can help if not then you could get sicker from the med..

I understnad what you are saying about affecting every aspect of your life..Yours I think it worse onylbecause of your young age and young children..I am 56 and my family is older..

I wish I could say this is what is wrong with you..God knows it would be easier and you could get on the right meds to help you..I do pray that this happens for you so that you get your strength back and your children regain their mama..

I do promise that I will keep searching just as you are and should I find anything that sounds familiar like your symptoms I will email you..

I have to admit the only thing that is different is your talking about when you start yawning that your tummy muscles burn and then it goes to your legs..But, you know what I just tried yawning to see what muscles get stretched--do this yorself..I was surprized to see that the tummy muscles are stretched as are those in the neck..So, I gotta wonder if when you are yawning-IF--you could have a pinched nerve in your neck? Doesn't explain the leg but at same time if tummy gets spasmed I bet it would affect the leg...
kd

angelsam75

replied on June 10th, 2009

New User

Hi Kdlee

Thank you for your contiuned support i have learnt alot from you i will too keep searching for an answer and just pray this consultant appointment comes up soon iwas searching the internet the other day and found i paper the dr i am going to see wrote dr dietri kullman i think that's how you spell it lol he is a neuromuscular dr but also deals in auto immune like MG and also channelpathies disorders.

The yawning is an odd thing does not happen only before a flare its not pain and the burning spreads all over from my trunk out and then the yawning stops but the heavy burning weak muscles carry on for hrs,weeks and even mths 2 mths being the longest where i cant even lift my arm up to my mouth as my muscles are so fatiuged and i have to keep strecthing and moving as i feel so awful in my skin and then it goes as soon as it came!! i do think this numbness could be a separate disc problem or fibromyalgia and the other things are autoimmune but who knows, but your right you do strech your tummy muscles and neck when you yawn but this is not burning as nerve pain more as if you have been running(i used to jog so know) and you hit your limit and cant jog no more and the muscle starts to burn due to being tired.

I hope you are well and having a good day.

sam

kdlee

replied on June 10th, 2009

Supporter

Hey Sam--wish I could say doing well..We have alot of storms moving through our area and the pain is off the chart today..Went to doc to see if something else going on with me hurting so much..

When I get home today from work will look up your doctors name..Sounds promising..kd

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