Fibromyalgia Scoliosis Arthritis

Posted by Fibro-sufferer @fibrosufferer, Nov 22, 2011

I am 29 years old and was diagnosed with Scoliosis in 2004 and in June of 2011 was diagnosed with Fibromyalgia along with arthritis in my hands, back and feet.
I am a homemaker (because I can not hold a job due to the pain) with 3 children, 10 years, 8 years and a 13 month old that just started walking and getting into things 🙂 I can not "call in" sick to this job!! So I need to find something to help me!!!
I have seen 4 rheumatologists, a hematologist (due to abnormal platelet level not linked to hemaphelia) a pain management clinic where I recieved 2 injections ( that DID NOT help) and have taken Cymbalta, Lyrica, and Savella all suppose to help fibro and they did NOTHING for me!! 🙁
I have found that Vicodin is the only thing I can take that helps me! I can't find a doc who will use this as treatment 🙁
I have tried exercise ( I just hurt more later)
I have tried physical therapy ( didnt work)
I have a tens unit that I can only use while sitting still due to the fact it "shocks" me when I tighten my muscles to move.
I'm really depressed and don't know what to do!
Please...any info that anyone is willing to share is much appreciated!! Thank you

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@fibrosufferer

Oh and I forgot to add how completely irritating it is to be told " you don't look sick!"
I want to respond with " well you don't look stupid!" but out of respect, I don't

Jump to this post

I have been had anemia since high school, chronic neck pain and left shoulder pain since August 30th of 2000 from a car accident, kidney disease since 2004 (I had enclampsia with my 4th and last child in 2000. My immune system hasn't been the same since), Fibromyalgia and Chronic Fatigue Syndrome since about 2005. I use to love excercising, staying active with my kids, working, I loved life! In 2006 my body became extremely wore down after my husband walked out at the end of 2004, my mom died in 2005, 7mo. after she died I was dealing with a custody battle, and a rebellious teen that I was praying would live to see adulthood. I say all that to explain that I understand pain, fatigue and stress to the max! I have had doctors say I'm too young, I have heard the same line you have too, still do, "You don't look sick" while they have this look that I must be doing better, when I have progressively gotten worse with time. I know they mean well because they love me, but it can be disheartening, because it makes me feel like they just don't get it! My usual reply is to say" thank you, I'm glad I don't look sick", while I politely smile. I can pull it together for a couple of hours and put on my game face, but I'm done after 2 or 3 hrs out of the day. I take vicodine for the pain. I have taken the same dose for 11 yrs. and I take the 3 pills I'm perscribed for the day. Even with such a large medical file I had to be persistant and keep going back to the doctor to get that 3rd pill after being in nearly constant pain for the last 7 years! Doctors or so worried about addiction they would rather let you suffer and try every other med out there first rather than give you what YOU know what works. Mean while people with our condition suffer. I know they're not all like that because I had a fairly good doctor, but when she left I got stuck with a P.A. that wasn't listening and I was losing hope and feeling disrespected as a human being, so I quit that company completely and went to a different one. I explained to the new doctor that I know my body after years of being sick. I know my lab #'s, I know my pain level, I know when stress is affecting me worse, and I know I'm not addicted because I don't think about my meds unless I'm hurting which of course is anytime I'm active, but my dose is the same dose as when I first started taking it, plus there are 24 hrs in a day, 2 pills are not cutting it. I use to cry from miserableness at the end of the day, that 1 more pain reliever helps make it tolerable. I always have about 3 to 4 days left of medicine when it's due to be refilled unless I have had an episode where the pain is beyond keeping it controlled, then I have to take more, that hasn't happened in a few months. I also explained I have taken every medicine they recommended! Cymbalta, Lyrica, and several others. Some gave me weird thoughts, NOT cool! I quit those immediately! The Cymbalta worked for the pain and anxiety, but it also made me gain weight. After a couple of yrs of being on it, and then going off, I lost weight and my blood pressure came down to normal. High blood pressure can shut my kidney's down. I can't take anything else at this point that I'm aware of.- I am so frustrated with the medical community, it makes me sick. They need to listen to their patients and quit assuming they know best for every person. They're human and make mistakes daily just like us. When I saw your original message my heart went out to you because my oldest daughter who is 22 now has mild scoliosis, degenerative disc disease in her neck, she get's migrains daily, and she aches all over at this point. She has a 14 mo. old boy too, so she can't always rest like she needs to. She is also having trouble finding a solution to her pain issues. My suggestion to you is to be persistant in finding a doctor that will listen to you, even if you have to find a different one. (As exhausting as that is). Also avoid foods that cause inflammation. I was feeling better when we were eating organic, I was avoiding soda, and junk food. In general you feel better. Magnesium, calcium, and vit. B is suppose to help with inflammation and stress. My husband and I started researching vitamins and organic foods, as well as people who have had similar issues have shared with us what works for them. Some of them said excercise helps them, but I crash when I excercise. However speaking from experience, pushing through the pain and miserableness does help keep your muscles from deteriating. I found that out last year the hard way. I hope you find what you need to help you in your situation. I know our bodies don't react the same to everything, so you have to find what works for you and don't give up on finding a doctor that will have compassion for your pain and give you the right pain reliever.

REPLY
@fibrosufferer

Oh and I forgot to add how completely irritating it is to be told " you don't look sick!"
I want to respond with " well you don't look stupid!" but out of respect, I don't

Jump to this post

Thank you so much for sharing!! I appreciate all that you've been through and all of your advice!! I think I found a doc who can finally help me...we will see 🙂

REPLY

I feel your pain. I have back neck leg issues everybody is telling me to loose weight I am fatigue all the time I have chronic illness I have hope that god will help me deal with my pain I have done massages physical theraphy chiropractor sign up gym to ease my pain my 12 year old is helping me to survive for my chronic illness I'm depressed and have anxiety issues but I do beleive in god that he will help us all just pray. Everyday. Take care!

REPLY
@powerofpositive

yes. the comment STILL blows me away at this point in time...one thing comming from a clueles person, quite another comming from a provider. i was told that for over 3 years..demanded referrals and was treated as if i was just another 50 something middleaged woman....and you know how they complain... i told her i don't fit the fibro tag she stuck me with...to many old injuries...symptoms didn't match...well the skinny is i have multiple auto immune disorders...soup to nuts..
you have a busy life with small children. it's good to keep moving as much as possible. but when they have down time so should you...a wee bit of pampering has theraputic effects. A nice hot bath, heat pads...even for just a few mins can be just enough to make the next hour bearable. have they screened you for other auto immune disorders? often they come in clusters it seems..
i reply to those "thoughtful" comments with " it's difficult for people to begin to understand how this illness can be so painful when you can't see it from the outside. sometimes as weird as it sounds it would be easier for people like me if there was some easy identifiable "mark" to give others a clue....but we don't because it is on the inside. i marvel at times how rude and insensitive seemingly intellegent people are breath takingly ignorant, cruel or both. That usually shuts them up or opens the conversation up for further discussion........
take a little time for yourself....enlist family or friends and do for yourself, ..just you...when you can. it is good not just for your body but your soul also. hope you have lighter days ahead.

Jump to this post

Well excuted thoughts and right on the money about even Drs who will comment "well I don't believe in Fibro"! I am always respectful, but reply, "if you had to live in my body or someone elses with Fibro, you would change your mind in a hurry"! I have found that mild excercise does wonders for Fibro. Mine is mostly in my head, neck and shoulders. After I get over Thyroid Surgery and a concussion(one of my meds did not mix with the Synthroid), I'm going back to those excercises. It's just the rolling the shoulders, arms outstretched and then press against your hand up against your head. Those 3 simple excercises work wonders for about 3 hours if you're lucky. It's painful then, but after about 5 minutes the pain from the excercises goes away along with the Fibro pain. Sometimes, I'm so stiff to even get up out of the chair takes an all out effort. I have started walking on a friends Treadmill and riding the stationary bike. I thought surely this would kill me re the pain, but actually it is making my lower extremeties much more loose. I can't walk on the sidewalk, it causes a lot of pain and I can't walk even 1/2 mile without bad pain, but on the treadmill, I honestly have no pain. I love your remark, "you don't look stupid either"! Have a good and pain free day if possible!

REPLY
@fibrosufferer

Oh and I forgot to add how completely irritating it is to be told " you don't look sick!"
I want to respond with " well you don't look stupid!" but out of respect, I don't

Jump to this post

Back in the olden days...lol, when I first went to a Dr for my pain,he told me I needed to go see a psych because there was no such thing as Fibro. I told him he could go see a psych for not believing that people were actually suffering from Fibrocytis(that's what they called in the olden days). !! I really have to stress how much excercise helps. Sure it hurts as you're doing it, but the pain from the excercises and the Fibro is helped for maybe 3-4 hours, then it's do it all again. That's why I see no sense in going to a Chiropractor, all that money because I'd have to go 4-5 times a day to stay out of pain! The reason the Dr touched you is there are 19 Trigger points on your body that are painful to the touch. That's about the only way Fibro can be diagnosed. I hope you find some freedom from the pain.

REPLY
@fibrosufferer

Oh and I forgot to add how completely irritating it is to be told " you don't look sick!"
I want to respond with " well you don't look stupid!" but out of respect, I don't

Jump to this post

PS, thank you WorkHorse 1 for mentioning the breathing for help with pain. I do deep breathing techniques for pain about 5 times a day. Breathe in deep through the nose and exhale slowly through the mouth. It's amazing what all this helps, even Panic Attacks!

REPLY

Hello fibo sufferers , it's hard suffering from chronic pain and especially not understanding why, it's been more than 20 years for me , first my doctor said he thought I'd maybe had stroke and or head tumour , ms was mentioned, lupus still and fibromyalgia is bad enough yet not as bad as fog or doctors saying can't do anything for you but your going to be ok . What is ok when you feel chronic pain every day all day long , if it was visible they would understand kinda, how you are feeling. Anyway long story short, tried their antibiotics and painkillers ( great name for something that is killing you slowly) in the end found homeopathy hospital doctors help for while , immune system crashed , made lifestyle changes choices made easier especially on pain still trying to pace balance isn't easy especially with your precious family needing you. Ginger root tea helps alot turmeric and ginger elderflower water either home made or frizzy I've found pineapple is great for pain and arnica too beetroot great for keeping blood pressure down and dandelion tea and chillies good for energy especially with butternut squash s and red onion soup even little chocolate it good. No milk lets face we are not babies any more found not eating tomato's too much helps cauliflower mash with carrot's great combo, spinach Add to smoothes with bananas and coconut milk/ water refreshing and Good rehydration . Cherries amazing and you might want to try without refind sugars in your foods i know sounds like a lot of changes but start by trying just rice and adding things you like really helps your lungs and heart to do swimming or gentle walk in water here they do warm pool treatment for fibromyalgia etc.. not sure how things work in USA, my heart goes out to you all its rotten disease. ( nerve pain is hard to deal with just recovering from shingles ,yuk ) look forward to spring time seeing tapestry of colour return, hope for better times ahead, and as weather plans heavy on fibromyalgia , sufferers , would be interested to know how you guy's doing. Kind regards swift HUG from chilly winter in England.

REPLY
Please sign in or register to post a reply.