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Discussion Starter #1
I would like to hear from members who either have or love/know someone with Fibromyalgia Syndrome, Chronic Fatigue Syndrome or similar auto-immune disorders/syndromes/illnesses.

I have been battling fms/cfs for over 7 years. I have been through so many different treatments, most of which are useless, that I feel like a 'guinea pig'.

Not only is it difficult to have one or more of these illness, it is also very frustrating for my family. They try to understand, but it is hard for them.

I am especially interested in hearing about treatments that have worked well.

If you personally have or care about someone who has an auto-immune disorder, please post or p.m. It would be nice to know I am not alone in this. :wink:
 

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You are not alone. *hugs*

I have been battling my Lupus for about 4 years now.

I am now in remission, and have been for almost 1 year...but it has been quite a war...and one I know will never truly end, since it is a chronic illness with no cure.

I first got sick at 19. I was tested for mono, HIV, Hepatitis, Leukemia, Lyme, etc. At that time, my main symptoms were my EXTREME fatigue...I had to crawl to the bathroom., high fevers, and a nasty, blistering rash. THe same week they came back with the Lupus diagnosis was the week my kidneys crashed. I woke up onemorning and was all swollen, and we found out they had shut down. I was on dialysis for a year, and was trying to pursue a transplant when one of them turned around and I regained function. I had about 2 months of doing pretty well, and we were hoping I was going into remission, when one night, I was sitting on my couch talking on the phone and watching TV with Aaron, and I went into a grand mal seizure. I stopped breathing and turned blue, the paramedics came and resusitated me. After that, my seizures went out of control. I was having up to 15 a day, and most of the time when I had one I would stop breathing. The doctors could not get ahold of them, and I spent about a year in and out of Intensive care. They thought I mwas going to die. Finally, slowly, some of the medications began to work, and they slowly lessened....it has now been about a year since my last seizure. I am now off al medications, back at work, and back in school. I am engaged to the man who stood by me through it all, even though we had only been on 3 dates when I got sick. I hope to have kids very much, but there is a good chance it won't be possible, both from the Lupus itself and the medications I took. I am in remission, but with an illness like this, it is always sort of peeking over your shoulder. I pray I will have a long remission, but there are no guarantees. I embrace EVERY moment, and am grateful tfor every day.

RIght now my only lingering effects are that I cannot go in the sun AT ALL. :roll:

You had asked in your post about treatments/medications....I have had a LOT!!! I took high dose steroids, which made me gain a TON of weight. (The weight DOES come off, though!- I am back to my old weight and I have only been off the steroids for about 6 months.) I took alot of different immunosuppresants like Imuran, Plaquenil, etc....and I took several rounds of chemotherapy...I was on chemo for about 4 months the first time, I think, and about 6 months the second time. YUCK!


I know this is a LONG post, but I thought I would share my story with you, and let you know that no matter HOW BAD it gets....ther IS a light on the other side. PM me or whatever you want if need to talk or have any questions. *HUGS*
 

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My rooommate has Fibromyalgia.
I believe she's had it since she was very young.
I know she has had severe trouble sleeping in the past, and for years she was never able to fall into a deep sleep. She says that she would never dream.

She also has trouble relaxing, and gets some pretty severe muscle pains.
She's not currently on any medication, but she has been in the past. I remember her saying that the medication causes her more problems than the condition. It helped her sleep but then she became severely tired throughout the entire day.

I feel pretty bad for her sometimes. She's 25 but seems to feel like she's 80. Besides the fibromyalgia, she is also anemic, has carpel tunnel and possibly has the beginnings of arthritis.

She prefers more natural alternatives for treatment. Her solution is to eat a healthy balanced diet, and to excercise on a daily basis, with excercise being most important. During times when it gets pretty bad, she'll also schedule a massage once a week. She can't completely get rid of the symptoms, but manages to keep them under control most of the time.
 

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I have Muscular Dystrophy. Affects my hips up my back, my arms, shoulders, neck and face. youc ant really notice unless im tired. my arms and back get tired easy and it burns when i lift my arms over my head or drive for long times. My hands almost always hurt and doctors thought i could have had artheritis in my hands from the tender age of 10. but 2 years ago i got diagnosed and all of a sudden it all made sense.

the most common thing is burning pain in my shoulders, weakness and pain in my hands and trouble sucking a straw.
 

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Discussion Starter #5
Hi Willow (((hugs)))
I am so sorry you have MD. I know what the 'tired muscles' and 'burning pain' feels like, as fms causes the same thing. I hope you are doing okay. :(

I was recently put on a medication used to treat MD and MS (Dantrolene) as my doc decided it would help fms too. I found it to be counter-productive and was actually making things worse.

I do hope you are doing well, and have good physicians who are willing to go 'above and beyond' to help you. It seems to be hard to find one for me, but I am still looking. :wink:

Thank you for sharing your story...if you ever want to chat, please feel free to pm me. :D
 

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I have Fibromyalgia and Chronic Fatigue too. I was diagnosed when I was 13. I've been through all sorts of treatments and on just about every medication there is. At one time I was taking more than 20 pills a day. The relief all of those medicines gave me wasn't worth it, and I quit them cold turkey when I was 18. I've been off the meds for 4 years now (with the exception of an occasional Aleve) and I have been managing my pain by trying not to think about it.
I think taking all of those medicines and seeing all the different doctors just reminded me of how sick I am. Since I've quit thinking about it much and talking about it I have felt much better. It hasn't stopped me from doing anything so far.
I still get really bad muscle aches that are sometimes hard to ignore, and I am always tired, but life goes on.
I'm happy where I'm at right now and I hope I don't have to go through any more treatment in the future.
 

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Thx Brynn

I try and ignore it, passing it off as me slouching or being tired or whatever. but its hard on me watching my mom and her sister, my aunt, go through it as they have it as well. My aunt and my mom, both spunky women who wont let anyone get them down spend most of their times off their feet now, in scooters or with canes. They were only diagnosed and had symptoms start within the past 5 years. I miss the women they used to be.

The only time I cant ignore it in myself is when hubby overtightens water/pop/juice/milk bottles and anything with a lid and i go hungry or thirsty or using a can opener. so i have to wait till i can find someone to open things for me like another apartment renter or until he gets home. Im an artist and I cant draw for more than 5 minutes anymore or knit or crochet anymore.

I just avoid these things now and just pretend i have nothing wrong with me. I only eat precooked foods when im home alone that i can just put in the oven and nothing i have to stir for too long. I know this is a terrible quality of life but since hubby cooks when he gets home id rather avoid anything that makes me notice my MD instead of trying to do things that obviously would hurt me and wallowing in my own self pity.
 

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I have it also. Had it for many many years befor ethey finally diagnosed it. I had been given many different things for pain also, but nothing ever really helps, so now I don't take too much, sometimes tylenol, sometimes asprin, sometimes a muuscle relaxant to sleep.

None of the doctors I saw in Nebraska where any good at trying to help me, once they gave me some localized shots, but that just made it all worse. I have yet to even go to the doctor since I have moved to Kansas. I guess I am too afraid to go.
I have lived here for 11 months.

I have lots of problems with congitive brain function with mine. Loads of depression ( i dont take anything for that either because I have taken it all and nothing helps with that for me, just made me worse) anyway, I have problems trying to talk sometimes, and remembering things is totally off. I have to write myself notes to remember, hopefully i will not forget the note, but mostly i do forget it.
 

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Discussion Starter #9
Please forgive the long post!

Thank you all so much for posting on this thread! I have become increasingly aware that fms/cfs (as well as other auto-immue illnesses) are not as rare as most docs like to believe. On my block alone (about 30 houses is my estimate) there are 5 fms patients that I know of! (No telling how many more that I don't know of) I have wondered if there is something in our water/air/etc...that is causing this, but I doubt it.

My first hint that something wasn't right was when I had a seizure in 1995. I then began to have the fatigue, unexplained fever, pain, swollen lymph nodes (especially at the base of the skull), headaches...the list could go on and on, as those of you who have been through this are aware.

My heart goes out to all of you: whether you are personally ill or are concerned and sympathetic in regards to a friend or loved one.

The sufferers who have posted have most likely had the same frustration in finding a doctor who has not dismissed the symptoms as some form of depression, mental illness, hypochondria, etc. Most sufferers have heard these 'impressions' by many doctors before someone finally took the time to listen and believe. I had several doctors tell me that fms was not a 'real' illness, and just an excuse for attention, etc.

More are taking fms/cfs seriously, but I still have the issue with most of the docs I have seen telling me that they won't help me unless I test positive for something "more serious" than just being tired and have aches and pains...oh, but if it was that simple!

Zoeae, I went through years of suffering before I was given a diagnosis, as well. I was given pain medication, but developed tolerances to it quickly, and instead of trying to rotate my pain medicines, he took me off of it (with the exception of a very low dose codeine that I can use ONLY for very severe pain!) With my tolerance, it may as well have been tylenol...it was no more effective.

Muscle relaxants can be quite helpful, if given in the proper dose and IF it is the proper muscle relaxant...most that I have been put on were not appropriate for me. I also had the trigger point injections...more than I care to count or remember. He has recently been pressuring me to allow him to give steroid injections directly into the spine, which I flatly refused. I always had more problems with the injections than I did without. I would hurt worse for about 3 months...have a very few weeks of slight improvement, then back to square one.

I hope you will look for a doc who can help you. It breaks my heart to think of anyone suffering with this who is not being helped. I also have cognitive/memory dysfunction - aka 'fibrofog'. I makes lists for everything and forget where I put the lists. I find them days later and then realize (too late) that I forgot to do something important.

I have had limited luck with the anti-depressant Lexapro. I was put on Cymbalta for a period of time, which is supposed to be ideal for fms patients and is also used for chronic pain relief. It was another one of the meds that I could not take. I don't think I am alone when I say that many fms patients develop sudden intolerances to various chemicals/medications/shampoos/make-up, etc. That is very true for me, anyway.

I admire greatly those who find a way to deal with this horrible syndrome using no medication. I have taken so much medication in the past 7 years! Most of which I would get filled, take one or two doses and realize I can't take it. I could probably stock and entire pharmacy with all of the meds I have flushed.

If anyone would like to talk about this more, please send me a p.m. It would be great to compare types of treatments - what has worked and what hasn't - research different people have done and info learned from the various docs they have seen...etc.

Each of you has a very moving and touching story.
I wish you all the very best!
Brynn
 

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Yup, I have Chronic Lyme Disease.
I've already typed out my story if full so in order to read it go here: http://www.xanga.com/item.aspx?user=Nao ... =210223546

I didn't put it all here in this thread because it is pretty long and I didnt know how many people would be interested in reading it all.

I've been ill for more than 10 years now. I was first diagnosed with CFS and then later with Fibromyalgia. Finally in 2002 we found out that I actually have Lyme!

I'm always open to talking to people so if you need someone to talk to who understands just let me know! :)
 

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I was diagnosed with FM a little over 3 years ago after sufferring for 10 years prior to that. I have had so many tests and prescribed too many meds to count.

My present therapy consists of Cymbalta 60mg/day which is an anti-depressant (I am not depressed) but it was recently granted FDA approval for the treatment of Diabetic Neuropathy which is nerve pain that some diabetics suffer from. It is now being used in FM patients as it seems to block pain receptors in the brain, thus helpful in lowering the amount of pain that the brain perceives.

My personal jury is still out on any benefit for me. I went directly from Lexapro to the Cymbalta and the Lexapro did provide some relief although short lived. My dose had to be increased nearly every 3 months.

I also take Zanaflex (muscle relaxer). I should take it upwards of 8mg per day but tend to forget meds (fibro-fog) so I usually only get in 2 perhaps 3mg every few days.

The absolute best treatment for me so far has been the introduction of deep tissue massage. I found a very knowledgable therapist who is highly skilled and fully understands FM patients. I get in to see her every 10-14 days. The treatment is quite painful but well worth it. Once some of the knotted muscles are released I feel better for a few days. I also see a wonderful chiro when feeling pretty bad 2-3 times per week and on my good weeks 1-2 times.

The hardest part for me is the sleeping thing. I don't sleep well, have a hard time falling asleep and can't ever stay sleeping. I can't remember a night that I slept more than 2 hours at any one time, hence it's now 1:30am on Thursday and I have been awake since 6am Wednesday morning.

I have so many of the FM symptoms aside from the terrible pain that I truely believe that my dr hates to see my name on her schedule. Insomnia, migraines, noise, light, sound and chemical sensitivities. Allergies, night sweats, constant feeling of having to urinate, hard time controlling my body temp, (too hot or too cold and always opposite of "normals"). My vision is going, my hearing sucks and my memory leaves something to be desired. The majority of the time I walk and feel like an 80 year old woman.

I have little to no energy, I am tired all the time, my hair is thinning and I have TMJ! I clench my teeth so much I break fillings and crowns. My skin is dry and I get rashes constantly. And don't even get me started on the carb and sugar cravings.....

But I am still verticle! Who's complaining? LOL

FM sucks but there are far worse fates. Find a dr that will actually listen to you and don't stop searching until you get some relief!
 

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Silverbelle said:
The hardest part for me is the sleeping thing. I don't sleep well, have a hard time falling asleep and can't ever stay sleeping. I can't remember a night that I slept more than 2 hours at any one time, hence it's now 1:30am on Thursday and I have been awake since 6am Wednesday morning.

I have so many of the FM symptoms aside from the terrible pain that I truely believe that my dr hates to see my name on her schedule. Insomnia, migraines, noise, light, sound and chemical sensitivities. Allergies, night sweats, constant feeling of having to urinate, hard time controlling my body temp, (too hot or too cold and always opposite of "normals"). My vision is going, my hearing sucks and my memory leaves something to be desired. The majority of the time I walk and feel like an 80 year old woman.

I have little to no energy, I am tired all the time, my hair is thinning and I have TMJ! I clench my teeth so much I break fillings and crowns. My skin is dry and I get rashes constantly. And don't even get me started on the carb and sugar cravings.....

But I am still verticle! Who's complaining? LOL
I think that this goes for pretty much all of us with this.
 

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I have M.E which in the UK can also be known as CFS. I have severe m.e and am bed bound/housebound pretty much most of the time. I have been ill for 5 years now and I can say for me it never gets easier, you never get used to it. It rules your life and there is nothing you can do.

If you want to talk feel free to pm me, sorry i don't want to say much more here.

I know you have probably found a lot of people here that can help you more than I can and that you have more in common so that is fine. feel free to ignore me.

I hope you are not to ill

Eva x
 
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