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Linda From Australia
05-28-2011, 08:22 AM
Under strict direction and supervision of my physio and Rheumatologist I exercise and do physio for up to two and a half hours a day. However, my muscles are wasting away. Excuse me for being a bit gross, but for example, when I sit down, my fat on my butt just squishes to the sides and I end up sitting on my tail bones (what ever they are). If you press on my thigh you can poke right in to feel my bones. I am not skinny and still have a healthy amount of weight on me. I have been really skinny in my 20s and 30s, but I never had this problem before.

I know many people with Lupus do not exercise or only do a little bit of exercise because of joint pain and they end up getting muscle atrophy. I want to know if any of you do exercise everyday and still have muscles disappearing?

I was wondering if this is just me, or perhaps a Lupus thing. Or may be even something unrelated to Lupus. I am on 400mg Plaquenil, and have only been on Prednisolone for 10 days, so I don't think it can be the steroids.

Gizmo
05-28-2011, 02:51 PM
Wow, Linda, that's a lot of exercise! If I were working that hard and still losing muscle, I'd be asking questions, too. I do have "mild" myositis (muscle inflammation) but it causes significant problems for me. I don't exercise (that's a story for another day), but I have noticed that even doing the things that I have done for years is getting harder. My muscles are weaker and more painful. I wish my rheumy paid more attention to my muscle issues than my joints because that's what causes the most trouble for me.

Has your doctor checked your muscle enzymes for inflammation? I know CPK is one they keep an eye on for me, and I believe that SED rate is another (for inflammation in general). Myositis can be very debilitating. My doc says as long as I can stand up without help, I'm doing OK. My standards are a little higher than that!

Quoting from The Lupus Book by Daniel J. Wallace, MD
"Inflammation of the muscles or myosistis, is observed in 15 percent of patients with systemic lupus. Established by blood elevations of the muscle enzyme CPK (creatine phosphokinase), a diagnosis of Myosistis necessitates steroid therapy because muscle inflammation may cause permanent muscle weakness and atrophy if not treated. Occasionally, an electromyogram (EMG) or "cardiogram" of the muscles is needed to confirm the presence of an inflammatory process. Muscle biopsies are rately necessary."

The Lupus Book is a great resource, BTW. It is written as a medical textbook, but most of it is understandable for a lay person. It is the only medical text that I have found specifically devoted to lupus. Dr Wallace updates it every 5 to 7 years, and I buy the new version every time!

Peridot20_Gem
05-28-2011, 03:18 PM
Well linda i have to applaud you on what your doing to help yourself with Lupus.

As you know i'm not on meds, i've got my muscles wasting the same as yourself with the sjogren's but i'm double up just to walk and the pain is terrible, god the quicker they sort me out on issues the quicker i can get started on meds but i've noticed being thin which i am tells on the bones alot more.

I actually think i'd have been able to move better if i'd have been able to take the side affects of the plaquenil but i have noticed such alot my legs getting thinner.

Linda From Australia
06-04-2011, 11:57 AM
Gizmo I looked up Myositis and it doesn't seem to fit my symptoms. Apparently my inflammation levels are Ok, and nothing else is really showing up in my bloods. I just figured the reason for my muscle atrophy is because I am so inactive, this is even with all my exercises I do. The exercises I do are very slow which are basically stretching exercises to improve my range of motion.

Gizmo
06-04-2011, 01:51 PM
Huh! Two and half hours a day seems like it should at least maintain your muscle mass. We do lose muscle as we age, but you look pretty young for that to be happening at a noticeable level. Do you have a doctor appointment coming up? Maybe it's a nervous system or circulatory thing. Not getting enough juice to the muscles?

BonusMom
06-04-2011, 02:43 PM
Wow Linda! That's a significant amount of working out to still be having muscles atrophy.

I have been having muscle weakness in my thighs, radiating into my hips. The PCP ran my CPK and aldolase levels to see if muscle proteins were spilling into my blood-both were WNL. I am having an EMG later this month.

My half brother has dermatomyositis. Neuro thinks either polymyositis or MS. Personally, I think MS a stretch as my weakness is bilateral and the numbness I had resplved when I stopped Imuran in February.

I definitely think this is something that you should have worked up. When someone sits on their hiney, you should be sitting on the fattest part of the tush, not on the tailbone. That would be mighty painful to sit on bone!

Even with my weakness, I haven't had any of the muscles atrophy. Yes, they're sore and weak but I can still walk. I can't do vigorous exercise as it seems to make the weakness more pronounced.

Please contact your doctor about this as I doubt it's simply a "Lupus thing."

Peridot20_Gem
06-04-2011, 04:39 PM
Well i have to congratulate linda she goes through so much daily but mentally she never gives up and keeps pushing that takes some willpower.

Linda From Australia
06-04-2011, 05:09 PM
I am seeing my rheumy on the 15th of June, in just over a week. I see my physio every 2 weeks. Like I said, my exercises are nothing more than stretches and making sure that I move all my joints.

I walk pretty slow, at times I limp (even though I try so hard not to) and if my ankles are sore as well as my feet, I am really really slow (probably all my own fault. They sell turtle soup at the school canteen, I have been addicted to it all year, perhaps I should just go cold turkey and quit - just incase you are new, that was a bad attempt at a joke)

I cannot stand for very long as it hurts my hips, feet, ankles or anything else that is hurting at the time. I cannot sit for long because it hurts my Butt, I have a cushion on my chair and another one in the staffroom. My joints don't swell, and my rheumy says he can move them freely. The only reason I can put down to the muscles not developing is because I am not moving very much, even though I am a teacher and I move all the time. This sounds rather confusing - no wonder my body is all screwed up!

By the way, yes i am very young .... as you can see ..... I'm only 48. Someone pointed out, very politely, that I am actually turing 50 next year!

Gizmo
06-04-2011, 07:24 PM
I walk pretty slow, at times I limp (even though I try so hard not to) and if my ankles are sore as well as my feet, I am really really slow (probably all my own fault. They sell turtle soup at the school canteen, I have been addicted to it all year, perhaps I should just go cold turkey and quit - just incase you are new, that was a bad attempt at a joke)

By the way, yes i am very young .... as you can see ..... I'm only 48. Someone pointed out, very politely, that I am actually turing 50 next year!

I laughed! Seriously, turtle soup? I guess there are some cultural differences - here if a school cafeteria served turtle soup protesters would be throwing red paint on the lunch ladies LOL

48 is young, and a long way from 50, if you ask me. When I had my heart cath the nurse told me I was too young to be going through all of that (I'm 47 for a few more months). It's been a long time since someone told me I was too young to have a medical problem!

magistramarla
06-04-2011, 08:51 PM
Linda,
My muscles hurt so badly and spasm so much that I have problems walking across a room, let alone doing any exercise.
Mine don't seem to fit the symptoms for myositis or atrophy. Instead, my calf muscles are big and hard - constantly contracted.
The muscles in my thighs are fairly tight, too and often spasm, sometimes pulling me to the floor. My hips really hurt and I walk very strangely.
Despite all of this, the docs swear that there is nothing wrong with my muscles!
Hugs,
Marla

Linda From Australia
06-04-2011, 11:06 PM
Yeah I read that before Marla, about how apparently there is nothing wrong about your muscles. mmmm..... well all I can say is next time they tell you there is nothing wrong with your muscles, give then a kick up their back side with your BIG calf muscle, and when they look shocked, just say .... "Sorry, I didn't do that, my muscle just had a spasm"

Oh you all do realise that turtle soup comment was a joke? We don't even have a canteen at our school

BonusMom
06-05-2011, 10:35 AM
Yeah I read that before Marla, about how apparently there is nothing wrong about your muscles. mmmm..... well all I can say is next time they tell you there is nothing wrong with your muscles, give then a kick up their back side with your BIG calf muscle, and when they look shocked, just say .... "Sorry, I didn't do that, my muscle just had a spasm"



Oh, I like the way you think, Linda!

Linda From Australia
06-09-2011, 08:25 AM
I had my fortnightly visit with my physiotherapist last night, and as usual he told me "Linda, you cannot do these exercises anymore" So now I cannot do anything to build up my muscles, just making sure my joints are moved to keep them from freezing up. He told me that my left butt is smaller than my right, and that would fit into why my left hip is sorer than my right hip.

I am off to my rheumy in 6 days, so I wonder what he will say about my muscles, or lack of them. My joints have been feeling a bit better, but I on't know if it is from the introduction of Prenisolone, or because I am doing less vigorous exercises. If I don't do any exercise, I feel so much better, but as soon as I get up to walk - OUCH the pain hits. If I exercise, it frees up my joints so I can move easier, but OUCh the pain hits. So in reality, I am dammed if I do and I am dammed if I don't

Peridot20_Gem
06-09-2011, 09:09 AM
Oh Linda your ace mate with your wit you do make me laugh, loved the comment "Sorry, I didn't do that, my muscle just had a spasm" lol

Linda how you saw your physio lastnight and he's told you, you can't do the exercises no more, my rheumo told me swimming was the only thing that helped concerning muscle wastage.

Linda the pain hurts me more mate if i walk but there again if i sit to long my hips start locking, ah it a right disgrace how we ah that old and look at the mess we're in, my neighbour's are 80 odd and fitter than me.

Linda i ah just refering on you but there's a majority of us dammed mate. xxxx

magistramarla
06-09-2011, 01:47 PM
my rheumo told me swimming was the only thing that helped concerning muscle wastage.xxxx

I've been watching while a new community center is buing built two stoplights from where I live, right across from the commissary. It will have a nice indoor pool on one end, and I am eligible to use it, with my military ID. It's scheduled to open in August, and I've already bought a new swimsuit.
Marla

Linda From Australia
06-10-2011, 04:58 AM
I go to the pool everyday, to stretch in the heated pool and spa, and when I feel up to it I try and swim for up to 10 minutes. Some days I only manage a few laps. However, my rheumy and physio have told me if it hurts, to stop, and do some lighter exercise. I didn't tell them that it hurts to swim, because I am getting tired of being told, "Nope - you can't do that"

So I have taken a few days off the pool, and only doing minimal exercises at home. I haven't hurt myself, but on the other hand, because I haven't gone through the whole ROM (Range of movement exercises) it hurts when I start walking, when I sit and when I stand still for more than a minute. I know swimming is good, but at times I feel worse after the pool than when I went in. It is so frustrating that I try to exercise, making sure I don't over do it, and then when I take it easy, and at times take a day off, I suffer the consequences.

This all seems quite confusing, but I hope someone will know how I feel. Actually I am feeling a bit worse than frustrated, I am pretty well (Rob can add one of his words in here) upset. As my daughter's psychologist told me the other week, I am bargaining, meaning, if only I do these good things, I will get better. Someone tell me what is the next stage of grief ....

Shock and Denial
Anger
Bargaining
Guilt
Depression/Grief
Reconstruction Of Our Lives
Acceptance

OK, so apparently it is guilt - what on earth am I guilty about, I think I will just go straight to depression

Peridot20_Gem
06-10-2011, 06:22 AM
I've been watching while a new community center is buing built two stoplights from where I live, right across from the commissary. It will have a nice indoor pool on one end, and I am eligible to use it, with my military ID. It's scheduled to open in August, and I've already bought a new swimsuit.
MarlaOh well, everybodys got no chance when that opens because our olympic swimmer off the site will give it some doing.

GO FOR IT MARLA.

Peridot20_Gem
06-10-2011, 06:28 AM
Linda before my rheumo told me about the wastage, i was told when i was 24 when i had to see a rheumo for my spine, he got a tape measure on my legs no joking and when i asked him he told me then and furthur down the line it's been confirmed again.

Linda i really do know how you feel, i'm in that much pain daily and i had to stop walking my dog tried just going a short distance with him and when i got back my one hip was doubled up and my hubby as took that job over besides other's.

I can't help but say this but this disease sometimes makes you feel like you've lost a losing battle and it's running your life.

Gizmo
06-10-2011, 07:14 AM
Linda, why is your physio telling you no more exercise? Is it causing inflammation in your muscles? I am so sorry that this is happening to you. Is is something that might help you get disability so you don't have to drag yourself through the day anymore?

I can really relate to feeling worse after even mild exercise. I have complained about that for years and have basically gotten a pat on the head and no help. It is frightening and frustrating to feel yourself lose strength and flexibility and not be able to do anything about it. I have had mild muscle enzyme elevations, but apparently it isn't enough to justify how I feel.

Linda From Australia
06-10-2011, 06:02 PM
Gizmo I don't want to get onto disability, besides I can't because my husband works. I love my job and want to teach full time as long as possible. I wake up every morning wanting to go to school. Teaching kids is fun and it distracts me from my problems.

When I do basic exercises (which is really no more than stretching) my joints hurt for a couple of days. I was walking around the park every morning and evening, but it was so painful, so I was told to walk in the pool instead. Bit that didn't last very long, I had to give that up as well. Then the exercises I was told to do in the pool also became too painful so now I have less to do. My physio I was doing at home has also been modified.

The basic reason for me not to do any more exercises to strengthen and build up my muscles is because they hurt me, not for just a couple of hours, but for days. This is even when I do different exercises every day. My Rheumatologist told me that if certain exercises hurt me for a lengthy period, to stop doing them.

I did a fair amount of research on Lupus and Exercise, because I am determined to get better, through medication and a healthy lifestyle. I was convinced that I can do all the right things to get into remission, and hopefully get off some of my medication, acknowledging that I will always be on Plaquenil, which was OK by me. I really didn't want to believe my Rheumy when he said if it hurts don't do it. I thought, come on, I had the idea of 'no pain no gain'. I NEVER put myself under a lot of pressure physically, I just thought that if you exercise then my muscles can build up which is good for my joints.

Reading about Lupus and exercise made me realise how important exercise is, but most importantly how to exercise correctly. I know when I feel better, and in less pain, I can increase my exercises. Then when another flare comes, I will be stronger and be able to fight the Lupus more effectively

Why exercise

If you don't exercise, your joints can become even more stiff and painful
If pain is a limiting factor, gentle slow, active or passive range of motion is important
This will help keep joints active and prevent them from getting stiff


Muscles

The stronger the muscles and tissues around the joints, the better they will be able to support and protect hose joints, even those that are weak and damaged.
If you do not exercise, your muscles become smaller and weaker
Exercise helps keep joints mobile and flexible, which allow for daily tasks to be completed as independently as possible


Risk of Exercise

Too much exercise can trigger a Lupus flare
The most common risk of exercise is aggravating your Lupus by working your joints or muscles to much.
This can happen if your exercise too long or too hard.


ROM: Range of Motion - exercises reduces stiffness and helps keep your joints flexible
STRENGTHENING: Help maintain or increase muscle strength
AEROBIC or ENDURANCE: Improve cardiovascular fitness: walking - water exercises - stationary bike

During a flare

Reduce exercise to prevent damage to the joints and muscles
Exercise that seem easy one day may be too much on days when your joints are more painful and swollen
Cut back on the number of exercises and gradually add more when your tolerance increases
If you notice a significant decline in your performance, talk to your doctor or therapist

Do not do aerobic/endurance or strengthening exercises when your joints are swollen or painful
You can adapt your exercises to put less stress on those joints
Next time you exercise, decrease the number of times you do each exercise, or do them more gently
Achy muscles and fatigue will usually indicate you are incapable of exercising at this time



How much is too much exercise

Exercise that causes joint or muscle pain that lasts more than 2 hours after exericse
Persistant fatigue
Increase weakness
Decreased ROM (Range of motion)
Joint swelling increases
Continued pain

magistramarla
06-10-2011, 08:59 PM
Oh well, everybodys got no chance when that opens because our olympic swimmer off the site will give it some doing.

GO FOR IT MARLA.

LOL - Terri
Sorry to disappoint you, mate, but I never learned to swim! In fact, I'm quite afraid of deep water. The most that I will do is some water aerobics in the shallow end.
My hubby is the swimmer - he used to break records on his high school swim team. I used to close my eyes and hand him the babies in the pool. He had every one of them swimming like fish at the age of six months - the first two grandsons, too. All five of the kids were on swimteams, as well as David, the oldest grandson.
All I could do was sit in the shade and watch.
Hugs,
Marla

H

magistramarla
06-10-2011, 09:10 PM
Linda,
I know exactly what you are talking about. I try my best to exercise, but I usually pay for it by being in pain for a day after.
I've tried walking around the neighborhood or walking on the beach. I've even tried going to the local mall to walk. It feels fine at the time, but the next day, I can't move.
I tried a trial membership at a gym so that I could use their pool. I did a few gentle water aerobics - nothing compared to what I used to do ten years ago. I was in horrible pain the next day. When the new community center opens, I'll give the pool a try. I know that Jeff intends to go so that he can swim laps. Watching him doing the butterfly is a thing of beauty! I'll go with him and see how much I can manage.
Good luck to you. I hope that you can find something that works for you.
Hugs,
Marla

Peridot20_Gem
06-11-2011, 12:52 AM
LOL - Terri
Sorry to disappoint you, mate, but I never learned to swim! In fact, I'm quite afraid of deep water. The most that I will do is some water aerobics in the shallow end.
My hubby is the swimmer - he used to break records on his high school swim team. I used to close my eyes and hand him the babies in the pool. He had every one of them swimming like fish at the age of six months - the first two grandsons, too. All five of the kids were on swimteams, as well as David, the oldest grandson.
All I could do was sit in the shade and watch.
Hugs,
Marla

HMarla,

That was a bad joke i thought you could swim but good of your hubby for learning the kids so early.

I got banned years back from certain swimming pools through fitting in the water and not alerting them because i used to love doing my lengths, front stoke then back stroke, it wares you out but it's healthy.

Love Terri xxx

Linda From Australia
06-16-2011, 07:15 AM
I just thought I would let you know what is happening at the moment. I went to my rheumy on Wednesday and he is concerned about the amount of muscle atrophy, considering the amount of exercise I have been doing. He is sending me off to see someone else for a second opinion, along with heaps more blood tests, ultra sound of my left foot (right foot has Morton's neuroma) my left foot it is now becoming sore like my right foot, and an ultra sound of my left hip because of the amount of pain, he thinks I have bursitis of the hip.

My rheumy says because my joints are becoming more painful, without swelling, along with increase muscle weakness and atrophy, he suspects there is some sort of muscle disease. I have been trying to be mostly pretty positive so far, but I have been having more and more difficulty carrying my teacher's bag and lap top. Everything started crumbling today, I must admit I did shed a tear or two in secret at school. I drink hot water (yes, boring, but that is what I drink) and I had so much difficulty carrying my cup downstairs. My arms have lost so much strength and it was so painful to carry the cup, I had to ask another teacher to carry it back to my classroom for me. I think that is when it hit me, OH MY GOSH I am getting so much worse, and I have no idea why. This was after I could only swim for a couple of laps at the pool this morning, which is frustrating because only 2 months ago I could swim up to 15 minutes. I have been noticing that instead of building up my strength and being able to swim better, I am unable to swim as well or as long.

I have my sooky la las in private every now and then, then I just put on my smile, grit my teeth and continue on with my life. However, unfortunately, people are starting to see through my mask.

steve.b
06-16-2011, 07:18 AM
i will offer my shoulder.

cry here.

Peridot20_Gem
06-16-2011, 08:03 AM
Hi Linda,

Thanks for updating we on your visit to the rheumo, i'm so sorry to hear linda how things are getting worse for you and the pain your in and i've noticed linda with the muscle wastage it does'nt matter how much you do, your weaker and it tires you out badly.

I'm here for you always linda as you know, as you've helped me through some rough times. xxxxxxxx

lovedbyHim
06-16-2011, 08:31 AM
Hi Linda, just had a moment to check on the forum. I'm sorry things are a mess. I don't even know what to say, except I will pray and hope the docs can figure this out and that you will grieve this too and survive the crappy stuff that flies your way. Your beautiful sense of humor with carry you along with people who love you on and off this forum. Cry it out and don't worry about keeping up the happy face for awhile. Tears are very healing.

magistramarla
06-16-2011, 09:41 PM
Hi Linda,
Hang in there, girl. We're all thinking of you.
When I got to the point that I couldn't carry things in school, my rollator became my best friend. It has a container under the seat that I could put books and papers in and I could put my cup of coffee on the seat to transport it to my classroom. That thing was also great protection to keep kids from running into me, too. It only cost $100 at a warehouse store, but was worth every penny. I use it in the house now. When I'm feeling weak and shakey, it's very handy for transporting drinks and food from the kitchen to the living area when I'm home alone. I have a cat who enjoys riding on it, too - LOL
Take good care of yourself.
Hugs,
Marla

Peridot20_Gem
06-17-2011, 03:27 PM
Marla,

I thought i was the eldest member here.lol I use a 3 wheeler Rollator and it's got a basket like yours and a tray, handy for my cuppa's mate and i got mine of ebay brand new for 30 so i could'nt moan, they're better than a walking frame.

Linda i suggest getting one of those as they're great and would help support you such alot if you need it and i'm thinking of you dearly linda. xxx

lovedbyHim
06-17-2011, 06:35 PM
Hi Linda, I'm thinking about you a lot today as I am home from work. Gosh woman you have a lot to deal with. I miss you but know you need to chew this new possible diagnosis up a bit. I feel so sad that so many are in bad shape. I wish your situation could just suddenly end. if I could I would wipe every tear that must be falling. Hugs to you. Keep us posted

Gizmo
06-17-2011, 07:00 PM
Linda, I'm glad your rheumy is taking this seriously and getting you checked out thoroughly, but I am so sorry that this is happening. You are such an upbeat, encouraging person - I hope that the people in your life appreciate that and give you lots of hugs and encouragement. Here's an air hug from me!

Peridot20_Gem
06-18-2011, 07:14 AM
Gizmo,

We all know how ill Linda is and christ knows how she copes sometimes but her wit is still in hand today (She's terrific) with what she's going through.

Kisses to you Linda xxxx

Linda From Australia
06-18-2011, 07:17 AM
Terri, I just realised what is happening, I am starting to experience muscle atrophy in my brain, now that would explain everything

Peridot20_Gem
06-18-2011, 07:39 AM
Well if it keeps we laughing carry on mate.xxx

Merrilyn OZ
06-18-2011, 10:37 PM
O my gosh Linda I leave the State and you're falling apart.
Sorry I have'nt been on the site for so long but what with packing and shifting across Australia I hav'nt had time to check in. Linda glad to see you've still got a sense of humour but your visit to Dt Langlands must have been a shock, sorry I was'nt about to chat to, think you could have done with a sympathetic shoulder.
My round of NEW Specalists starts next month not looking forward to it. Was going to take myself but my daughter won't hear of it says New city etc.etc and she'll take me.
Talking about muscle weakness I'm starting to get more problems with my hands and upper arm muscles - can't open screw tops or grip heavy items - most frustrating, I know what you mean about the cup being to heavy Linda.
Will catch up on everyone elses news over the next couple of days when I have time for breaks from unpacking.
Take care every one have been thinking of you all

Peridot20_Gem
06-19-2011, 05:22 PM
Hi Merrilyn OZ,

Sorry your not doing to good either but i wish you all the best with your appointment's next month and hope your move settles for you easy.

Terry xxx

BonusMom
06-19-2011, 09:27 PM
Linda-
I am so very sorry that your muscles are so weak. I do hope that you get some muscle testing done quickly, as well as CPK and aldolase blood draws to see if the levels are high.

I am having an EMG/NCS on the 30th for muscle weakness, but I'm not having anywhere near the issues as you, thankfully.

I am very concerned for you and hope that your rheumy treats this aggressively on your behalf. Please keep us posted.

Nonna
06-20-2011, 12:37 AM
Linda my friend, Life is constantly throwing us curves. You've had plenty of them lately. Here are plenty ofCyber Hugs for you.

My muscles spam all the time, sometimes I just sit there and watch them dance, where it's my arms or thighs. Keep trying to do range of motion exercises. I have to start over. What a pain- I'll start with 5 repeats.lift my arms over my head 5 times; don't laugh people youdon't know how hard that is, how painful that is. That's probably why I'm awake at 3 AM. Oops it's now half past.

Hugs to you Linda, you are one hell of a fighter. I still work and constantly spill my hot tea on the way back to my desk, by the way.

Toni

Peridot20_Gem
06-22-2011, 08:31 AM
Hi Linda,

How you feeling mate now and i hope you've been taking things steady with how ill you've been.

Hugzzzzzzzz you way Terry xxxx

lovedbyHim
06-22-2011, 11:37 AM
Hi Linda, I hope the new walking device is helpinging you out and making carrying things a bit easier. I'm thinking about you. You are one strong girl in spite of the crap you are going through. When I grow up I want to be like you (smile). Today I will wallow in self pity. Bless you dear.

Peridot20_Gem
06-23-2011, 04:26 PM
Linda,

Come on mate and update we please on how you are and if any aids are helping??

Linda From Australia
06-24-2011, 02:09 AM
Hi Linda, I hope the new walking device is helpinging you out and making carrying things a bit easier.

I have no idea what you are talking about with the new walking device. I really wish I had one though.


Linda,

Come on mate and update we please on how you are and if any aids are helping??

I just came back from having my left foot ultra sound. This is the official diagnosis:



18 May, 2011: Right Foot
3/4 webspace intermetatarsal bursitis

24 June, 2011: Left Foot
Intermetatarsal bursitis within the 2nd and 3rd interspaces

I am having two injections in the feet next Wednesday and Friday.
I was really disappointed though because the doctor couldn't find any bursitis in my left hip. I was really hoping I can have an injection there as that is what is causing me the most trouble. My Rheumy said that there are no inflammatory markers and my joints don't swell so it isn't Lupus. So I suppose we go back to the drawing board.

lovedbyHim
06-24-2011, 03:03 AM
Hi Linda sorry for my misunderstanding. I thought you went shopping for something you could push to help keep you from spilling your coffee. We have walking devices here in the US that have seats on them, for warring things (giggle). I am obviously not doing well. Yesterday I napped 4 x and poured my juice in to my med bottle instead of my glass. I guess this is why my doc sent me to bed and took me away from the steering wheel.

I'm sorry about the test results Linda. I pray the docs figure it out soon. Keep the faith dear girl!

Peridot20_Gem
06-24-2011, 03:30 AM
Hi Linda,

Well i hope the injection's help your feet let we know how that goes but what the hell about your hip and him saying he does'nt think you have Lupus..well if your back to the drawing board what happens now mate have they said??

Hugzzzzzzz you way linda. xxx

magistramarla
06-25-2011, 10:20 PM
Hi Linda,
My joints don't swell, either. That has caused some of the docs to try to dismiss me. I've read that some forms of arthritis, including Lupus arthritis and Psoriatic arthritis, can cause pain and damage in the joints without causing redness and swelling.
Keep after them for some answers. Has the doc considered Avascular Necrosis in your hips? Have you taken lots of steroids? That can cause AVN.
Hugs,
Marla

tgal
06-25-2011, 10:24 PM
Hi Linda,
My joints don't swell, either. That has caused some of the docs to try to dismiss me. I've read that some forms of arthritis, including Lupus arthritis and Psoriatic arthritis, can cause pain and damage in the joints without causing redness and swelling.
Keep after them for some answers. Has the doc considered Avascular Necrosis in your hips? Have you taken lots of steroids? That can cause AVN.
Hugs,
Marla

I am having this same issue!! My knees and fingers will hurt so bad but they do not swell.

steve.b
06-25-2011, 11:45 PM
fibromyalgia, can cause joint pain with/without swelling.

tgal
06-25-2011, 11:53 PM
fibromyalgia, can cause joint pain with/without swelling.


Yes it can and fibro can often feel as bad as the Lupus. There is also another kind of lupus called SCLE Lupus which is kind of a middle ground between discoid lupus and SLE. SCLE affects the skin and the joints but doesn't affect the organs. I was actually diagnosed with this pretty quickly but the SLE diagnosis was much harder to come by.

Nat
06-26-2011, 04:00 AM
Hi Linda,

So sorry to hear that things haven't been going well for you, I hope you've been getting a lot of support for what you are going through. I must say, you sound like such a strong person to have been pushing yourself to do exercises etc for so long to try and stop/slow the problems you're having with your muscles. It makes me realise that I really need to be doing much more to look after myself!! I really hope you get some clear answers soon, my fingers are crossed for you!! Take care