[ceenic123]

I went to a Bowl-A-Thon Fundraiser for my son's school last night. My husband and I went and left the kids home. We went with our closest friends. We had a Great time. We laughed so hard I had tears in my eyes.:rotfl:
Today, I am paying for it. I can hardly walk. My ankles are in excrutiating pain and swollen. I wanted to take the kids to get Halloween costumes but was in too much pain and unable to walk w/o assistance.
For years I have had this problem, I can walk at a store or walk anywhere for an hour or so and be in great pain the next day. I have had this since I'm 11, now 35. I have gone to doctors, all kinds of specialists and only 1 took xrays and said that I have the begining of arthritis in my ankles. That was at the age of 18. This year they took xrays (diff. Dr.) and said that I do not have arthritis. I don't get it. It just drives me crazy because no dr. can tell me what the pain is from or swelling. I'm sorry, I just had to vent. I'm just do disgusted with the pain and doctors as usual. Thanks fo reading.

 

[KarolH]

Sorry that you tried to do something fun and now your paying the price. This is sad and I learned a long time ago that i can no longer do the things I used to call fun.............very frustrating.

Funny you mention bowling because my husband and I went bowling Saturday night. He asked me if I wanted to go and I said yes and off we went. When we got to the bowling alley and went to pay for the games and rent shoes, this is when I told him I did not want to bowl, just watch him bowl.

He paid for himself and we found the lane. He told me we did not have to go Bowling if I was not up for it but I know if I told him I did not want to bowl then we would not have gone. I am tired of my illness dictating what we do for fun as a couple and ultimately stopping my husband from enjoying little things in life.

He is almost 10 years older then me and can run circles around me, such a shame. This time of the year in New Jersey when the weather changes and barometric pressure falls I develop excruciating pain and random swelling too. I wish I could climb into bed and not wake up until May when the flowers begin to bloom.

Just wanted to say I understand your pain and frustrating and hope you get back to feeling ok again. By the way, keep me posted if you call University of Miami. I have a feeling you are going to love this doctor.:wink2::wink2:

Take good care of yourself.

 

[debatat]

Hi, I am glad you had such a good time bowling. It is a shame that we are bad afterwards, I find that I am prepared these days. I rest the day before and keep the day after clear. To me it is worth it, to still have fun. Learning to pace ourselves is key with this illness. Rest up today, you will be ready to bowl again soon!!!!!!

Deb x

 

[ceenic123]

Thank you both. I know that everyone on here understands. It is such a shame how much pain we endure. You know, even though I am in pain still, I have no regret. We trully did have alot of fun and laughs. :lol: I will just have to try to stay rested. The next time we go bowling, I will try not to stand as much as I did.
Karol, I am going to call Miami, probably going to do it next week or so. Thanks again.

 

[keebler]

Hi Ceenic,

I bowled with my kids last winter. Only one game and boy did I pay for it.
I was so sore and in pain for a few days. I knew I was going to pay for it but I did have fun though..:smirk:

Take care,
Lyn

 

[Salopsally]

Hi Ceenic,
I know exactly what you mean too. Its so frustrating that there always seems no tangible cause for this inability to do what most people just take for granted. I used to love shopping and also going out to live bands with my friends. I just cant seem to walk far. I start off all up for it then after walking around the shopping centre for 30 mins I want to be' beamed me up Scottie ' home again. (Thats a reference from Star Trek sorry.. not sure if that travels to America lol) I cant seem to stand for long or walk for long either. I do have Lupus and Fibromyalgia ..so they say but they still dont seem to know exactly why Im in pain with walking and standing. Even sitting for any length of time now seems to cause me pain too.

I hope you get some answers. Sometimes just being told why we are feeling as we do seems to help. I think.. come on now whats wrong with you.. its only a bit of walking or whatever.

I am also like a dying duck the day after too much exersion. Then the doctor says .. get more exercise. Ha Ha.

I know how frustrated you feel because you look lovely,young and happy and it seems ridiculous how much you suffer for something so simple as a bit of bowling .. or walking. Think its hard for others to understand too if they havnt experienced it too.

Keep enjoying yourself anyway. Thats what I think. I just have to have some days where I just veg out and recover for the next time.

Easier for me though as my kids are grown up and I live alone. Difficult I expect when you have kids and husbands to look after.

Take care
Sal x

 

[pixie_geen]

Enjoy as much as you can but rest, I am finding that out quickly:rotfl:
I had to answer back about the Dr's making you mad. I have just been diagnosed and finding it very difficult as I am so sore and done in all the time, I dont sleep either but have resently been given sleeping pill which are not helping
I went back to the local health centre yesterday and seen another different Dr,thats two in a week, and she was the pitts
I am very confused about Lupus and how it will affect my life and best she could say was "Hundreds of people have Lupus your Epilepsy is worst, what do you want me to do"
I would like a little help not to be feeling I am wasting her time I know how I feel and NO my epilepsy has never made me feel like this:sad:
Am I over reacting or what the h*** should I think now??? So confused and now I feel like a moaning fraud.
Gps should stick to what they no and if unsure they should shut-up
I see my dermotologist in two weeks and am waiting to see the Nuero but now I am so nervous to tell them anything incase they also think I am a moan

 

[Lily]

((((((ceenic)))))) Yes we sure can identify :grhug: needed I think!

((((((Pixie))))))))

Gps should stick to what they no and if unsure they should shut-up

Ain't that the truth!!! What an ignorant rude woman, she chose the wrong profession! Your Dermatologist and Neuro should be more up to speed on Lupus, so don't hold back.

love
Lily

 

[ceenic123]

Pixie, so sorry to hear about that appt. I agree, you should not allow that woman to talk to you like that. She should have chosen a different profession. Yes, I do know about Star Trek, it is actually very known here. lol
@ Sal, Thanks for the lovely compliment. It is hard to rest because I have little kids in addition to older ones, But I will definately try harder.
I will definately try to rest some time before and after. After all is said and done, I would do it all over again, just more rested. It was for a great cause and we had loads of fun. Thanks for the hugs, I so needed them, I am still aching today. You all are the best. Thanks. Hope you all are having a pain free day/night!

 

[shelleylouise]

hi there,
glad you had a great night but so sorry you paid for it afterwards,I too have learnt that if I go out & enjoy myself I fully expect to feel poorly the next day so if I know Im going out I always try to make sure I dont have to do anything the following day & can rest,

what you said about your ankles has really struck a chord with me,I think its a common thing with lupus to get problems & pain in the small joints of the feet & ankles but over the last few months the pain & swelling in my feet & ankles has become almost unbearable - sometimes I really dont even know how to lay in bed it hurts so bad,
over the last 6 months I have sprained both ankles 3 times & finally bit the bullet last month & went to see my gp about it,she referred me to a physiotherapist & I have just found out that the tendons around my ankle have worn really thin & become frayed due to the lupus & they are now too weak to support the ankle joint & this is where all the pain & swelling is coming from & why I keep spraining my ankles,maybe you would benefit from seeing a physio too,they tell me it can be much improved it will just take time to strengthen the tendons agains,just a thought but maybe it will help you
take care x