im new to this hello all this is fibro man

[Cheryl Ann]

Cheryl Ann, I try to walk and move when I can but I haven't noticed any difference. From everything I've read, it sounds like I should feel a difference. Do you really feel less pain when you exercise? physical therapy in a pool sounds so nice, I love the water but haven't been in a pool in ages.
-sarah

Hi Sarah,
I know that is what they say and I cannot tell unless I am in the pool. Exercise on land hurts me more than in the water but if I can't hardly walk, I try to walk or just stand for a little around my carpeted livingroom. I still hurt but it does seem to loosen up a little. I'm thinking of the last time I was hurting really bad. My foot and ankle were extremely swollen and trying to stand up straight hurt so I held onto a chair and tried to stand a little bit taller over a period of 2 minutes, maybe? I was able to stand up pretty straight I guess, just a little stoop but that was all I could take. Had to lay back down after that. Walking exercise at that time was trying to make it to the bathroom in time.
I believe the idea is to keep things from becoming cemented in one position?

I was thinking its never too late for you to start exercising in the pool. :razz: I went today. When I got up this morning I thought, "Oh poo! Its starting again." The last few days I've been getting more and more trigger points that hurt and they don't go away, nor do they hover around a pain level of 2 anymore. For 3 weeks I had that luxury; feeling "normal" bc of the steroid shot I was given to get the inflammation to stop. I had to get it bc it was starting to affect my breathing and swallowing when the flare up went to my jaw joints. It doesn't make sense to me that a flare up in my jaw joints would affect my breathing but for some reason, when I breathed in deeply, it hurt.
Anyway, I took a detour there. lol I hurt this morning more than yesterday morning and after the pool, those 3 pains are gone mostly gone and I only have 2 new ones. lol LIFE! How could we know where we would be today? Only God, so why? So we can help solve this disease by sharing our experiences with each other and with our doctors and nurses.

Peace,
Cheryl Ann

 

[Roch]

Hi. I'm new to this site too. I was diagnosed about 12 years ago and have had too many flare ups to even comment on what all my triggers are. The main one is stress for me but also a change in the weather. I have been bad this week because of the rain which has had me sofa bound for three days. The bone aching exhaustion is one of the worst symptoms coupled with brain fog renders me useless for days at a time. I am 37 years old and most days feel like a 90 year old. My children take team mick out of me saying they are going to buy me a mobility scooter so I can about easier, but then it is hard for them when they see me in so much pain I can't move.

 

[fibro man]

the days are long you bet i just take my meds and try to stay calm and keep the anxiety level down as much as i can but the flare ups continue that with me they are weather and stress related im in chicago and today it was sunny and 72 degrees and this day was not that bad but it is really tough to get stage 4 rem sleep which i get sometimes but not often but im glad i found this site my 1st day i posted the same message 3 to 4 times because i did not know how to post correctly but im learning how 1 step at a time so please excuse the extra post that is the same message will i hope you are doing well and you fibro is under control and have a very nice nite got to rest some fibro pain be back later after i rest some the fatigue is what really makes me upset because i used to do so much before the fibro got me i know everyone is in that boat so have a nice nite and take care

 

[fibro man]

the weather change is just so painful and im like you when that happens im bed bound for at least 3 days im useless till my body gets used to the weather change it is warm now but the cold weather is on the way and i know what will happen i will have a massive fibro attack and im like you the pain is so bad i cannot move and it is tough on the family because they really have no idea about my condition they know what it is but no one in my family that has fibro so they really do not understand the flare ups and the pain cycle sleep cycles that we go thru so im trying to educate them on the fibro basics and im doing that thru this site for them to see that there is other people out in the world with the same condition so im going to rest for a while be out later so now i do not think its just me with the same symptoms i know there are other people with same condition

 

[Cheryl Ann]

Hi Fibroman and Roch,
A big change in temperature is another trigger for me I think. We have had some crazy days in SW Michigan (SWMI). It has been in the 70's this week (76 today). Friday its supposed to be 70 and Saturday the high is supposed to be 59. A 11 degree shift like that plays on my fatigue. All I want to do is sleep and its a beautiful 70 degree day. I made myself get up today so I could take meds and go to the pool. Yay! I made it

 

[diamond]

Cheryl Ann if you have problems walking and standing how do you know that when you get out of the pool you have not hurt yourself all over as it must be quite a lot of activity just getting there getting changed walking into the pool then do you do a set exercises or swim?

By the time you get home you must have used your whole body a lot.... arms to change clothes, legs and hips walking going down steps into pool etc?

How i am right now that seems impossible and i would be scared i had kind of injured myself as i cant walk to the end of my drive at the moment and typing or even laying in bed i am in so much pain.

I am so confused how to change things from the awful level of disability i have had for last 6 months. It was after being in bed lots for a month i suddenly realized overall that had made things even worse. I was so depressed and felt so generally ill with migraines /jaw pain couldn't talk much and fatigued i just curled up to escape.

I am scared i have been inactive for too long as i am all ceased up and whenever i do even small things like walk around lounge or have a shower i dont ease out i hurt much more.

Sorry for butting in to fibromans thread

 

[Cheryl Ann]

Hi Willow,
I don't think you're butting in. I think we all need to share. Today, I am doing pretty good. I think I overdid it at the pool with my arm exercises. I need to pay attention to how many repetitions I am doing. My shoulder hurts a little but not too bad. I go again on Thursday.
I guess I need to explain my illness.
I was diagnosed with Fibro when at the time I had a lot of pain in my knees, bottom of feet, and hands, a tendon in my palm would always become inflamed and try to make my hand curl up. I used Voltaren Gel on it to make the inflammation go down. I had to use a lot of it. Its not my favorite go to med but it worked. The palms of my hands were always red as well, which the doc pointed out and prescribed Propanolol (a drug for blood pressure - mine is fine). He said he was prescribing it in hopes that it would help. I took it for quite a while but I don't think it helped. I was also getting large lumps on my neck and head. I was diagnosed with Angioedema (hives under the skin). He sent me to a Allergy Specialist who specialized in hives and prescribed Zaflukast (or something like that) in hopes that it would help. I don't think it helps so I recently quit taking that drug too. My rheumy also prescribed Meloxicam (Mobic) for the Fibro.
The pain increased over time to the point I was unable to function so the PA at the Rheumy's office sent me to a Pain Specialist. The first thing that dr did was give me shots of steroids and Lidacaine. That didn't last long and I didn't like that dr. He was rude. He suggested that I start land physical therapy with their therapist. So I did but ended up hurting myself. I saw a couple of different drs there and finally they set me up to see their OD. He was great! He prescribed Gralise (Extended Release Gabapentin), Cymbalta, and Pool Therapy (which is amazing).
Meanwhile, I was seeing the PA at the Dermatologist's office. I have little red bumps on my fingers, eye lids, under my breasts and under my flat tire of a belly, that come and go but mostly come. I use Clobetasol Foam for my fingers and Desonide lotion for the other places. The PA diagnosed me as having Dyshidrotic Eczema and Inverse Psoriasis. I have no idea if the diagnoses are correct.
I quit going to the pool for several reasons. The main reasons were that I felt better and my husband's sister and then father were in the hospital and we drove to the other side of the state a lot to see them.
Overtime, the pain increased and moved around my body and was constant and unforgiving. During this time, I was bullied by my rheumy's PA. I don't think he believed in Fibro. He said to me once, "I had cancer once. Now that's being sick." WTF?

 

[Cheryl Ann]

oooPS! I hit the send button evidently. Sometime after that, before my next appt which would be with my rheumy doctor, he sold his practice to one of the local hospitals and thankfully the PA retired. There was a gal that took the rheumy's place and she was fabulous. I told her I wanted her to be my doctor and she told me she was moving back to Alabama in November so she's gone. I am waiting to get into the Rheumy's office to see the NEW permanent rheumatologist but I guess he hasn't figured out his schedule yet.
So anyway, during the Alabama dr's stay, I got very good treatment. I had developed new symptoms of swelling. The inflammation was extreme and moved around my body to different parts, lingering 3-10 days in each part before moving to another. The inflammation was so extreme that it alarmed my Alabama rheumy. She had put me on Celebrex and said it wasn't keeping the inflammation down so I either needed to take Prednizone (which will always be my last choice) or I could have a shot of steroids. I took the shot and it has been 3 weeks and 5 days since I have had severe pain and there has been very little swelling. She ordered lots of blood tests and wants me to go on Humira. Humira is darn scary. I don't want to go on it but what happens when the steroid shot completely wears off and I have a major flare up? I can't get steroid shots forever. I'll get fat and my voice will get deeper, right? Plus steroids just aren't good for your body, right? I need to do some research I guess.
To answer your question Willow, I have my husband drive if I can't and I guess I would have to call ahead to make sure someone at the pool could help me get around. I'm sorry you're in so much pain Willow and Fibroman. I wish I had the secret to curing Fibro and whatever other autoimmune diseases we have along with it. This inflammation issue I have is not Fibro. It's something else. Perhaps MCTD -- Multiple Connective Tissue Disease. I haven't heard back about that blood test yet. I have Ulcerative Colitis too so the Alabama Rheumy had ordered blood tests concerning arthritis caused by the UC. I haven't seen those blood tests yet either.
Sorry this post was so long. Thank you for reading it. I know its long and wouldn't blame anyone for skipping over it bc of that.
God bless and Peace

 

[srhalex]

thanks for explaining your pool routine, Cheryl Ann. It's good to know all the options out there. If I'm not at an appointment, I'm in bed these days. It's hard to know how hard to push...
-Sarah

 

[Cheryl Ann]

Sarah,
You're welcome. I agree with you. Some people say, just push through the pain and keep on going. Ummmm..... during a flare-up, pushing through the pain is pretty much impossible. There have been some days when I couldn't go to the pool bc I just couldn't get out of bed.
I know that the pool therapist told me that if you are exercising and it hurts.... stop, don't do that exercise or only do it to the point of just before it begins to hurt.
If you have the energy, go. I think I could only go to the pool the other day bc of the steroid shot.

 

[diamond]

Thanks for putting so much effort into your post Cheryl Ann thats quite a story.....i bet you don't really know what bits are fibro and which bits are something else.

I did wonder why you were having steroid shots and experienced swelling when i read some of your other posts.

I am beginning to wonder if all the stress i have had in the lat year has brought on other auto immune problems in me. I hate doctors and have avoided lots of appointments and meds until the last few months.

I look back and think how lucky i was with just fibro a year ago as i had much better, quite productive times along with the really bad ones.

Because i hurt all over all the time now i don't know if pool therapy would help me....i think its very unusual to hurt everywhere all the time. I used to kind of have a line and below the waist was my more frequent pain places and my upper body was reasonable depending on how much i used it ....reacting more sometimes than others...sometimes i could work in the garden and do housework until i ached but it always recovered in a day or too. Now it just plain kills me to have a shower.

I would love to think something would help and would give pool therapy a go but i seem to be reacting just to doing the washing up, brushing my hair, carrying laundry i would be worried how my body would react.

Where do you have the steroid shot...is it for all over or specific areas? I was offered this for my shoulder years ago before the fibro diagnosis as a kind of cure all for unknown pain.

Thanks for sharing so much about yourself...it helps and is interesting although i am sorry and sad to that you have multiple problems
Take Care

 

[Cheryl Ann]

Hi Willow,
Thank you for your kind response. I was so worried about it being so long. I used to get the shots in specific places: shoulders, 7 or 8 places in my back, and my knees but those were for stiffness and pain. The last steroid shot was for inflammation and I took it in the upper arm.
As far as pool therapy, yep, I'm a big advocate. The only thing I could say is you never know until you try.
I don't recall who it was that said they had a hot tub. That would help too. I don't know if you can put Epsom Salts into a hot tub but that would be terrific if you could and you had one. Wish I had one. lol
I read a lot about our society's magnesium deficiency. Epsom Salts has lots of magnesium and if you soak in a tub with it, your body will just absorb it. The article was amazing, very informative. My magnesium supplement is only 133mg and a person with Fibro needs 400mg - 1000mg. Guess I need to add that to my grocery list. Read about Magnesium Deficiency. I think DK Engineer may have posted something about it once or someone did. I'm sorry I can't remember who it was.

 

[srhalex]

Magnesium is also one of the things my headache specialist recommended for my chronic migraine. For the people it helps (in the headache world) it has to be in high doses (400-600mg per day). In my literature it says the main side effect is gastrointestinal stuff (diarrhea), but I'm sure it differs greatly from person to person.

p.s. Willow, I hear you... showers can be hell.

 

[vivifarr]

Hi Cheryl Ann, I am new to this site and am looking desperately for advice for my poor sick daughter. Could you be so kind to tell me what medications you have been given, I think you mentioned steroids and other unfamiliar names. We are in the UK and I think doctors here are very behind in their thinking and accepting these chronic illnesses. sHe has only had painkillers and no referrals at all. We are desperate for information of anything to help with the pain and stiffness. I would be so grateful. Also anyone else with any info, please ?

 

[Cheryl Ann]

Welcome Vivifar,
So sorry to hear that your daughter is ill. You have to be your daughter's advocate and ASK for a Rheumatologist referral.
Steroids are NOT good on a long term basis. The shots I used to get at the pain clinic for my shoulders had to stop bc they said it would start breaking down the cartilage. I had no idea. Prednizone is also a steroid that the doctor's like to give to bring down inflammation. This is an effective drug but I don't like it. It gives me insomnia and mood swings but every medication can be different for everyone. The shot of steroids I got a month ago has given me terrible insomnia but I have been pretty much pain free all this time and very, little swelling. I think the swelling I'm getting could be due to my Osteoarthritis.

If you do go to a pain clinic, you may want to ask them what their least invasive treatment is. I was a little ticked off that they started with shooting me up with steroids instead of having me try the pool first but what do I know; the pain and inflammation may have been to great at that point to just go to the pool. They did not discuss with me my options and I didn't think to ask bc I figured they knew what they were doing.
I suggest that you and your daughter write down all your questions as you think of them and make sure the doctor answers them all. Communication is soooo important in every relationship, yeah?

I've noticed that people are this site are on all different kinds of meds but that Lyrica is one I've seen a lot. I am not on that one though.
For my Fibro, I take:
Cymbalta {90mg} Fibro & Depression
Gralise (Gabapentin ER tabs) {600mg} Fibro, Inflammation, Arthritis
Celebrex {200mg) Fibro
Mobic {15mg} Fibro, Inflammation, Arthritis

Best of luck getting your referral. I hope I've helped some. God bless <3 Have a good night.