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

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I tried telling my husband to just shoot me and put me out of my misery. He just flatly refused. I wonder why? 🙂

What is the difference between the docs at Mayo and other docs (pain management, rheumatologists, neurologists, etc)?

My knuckles feel like someone is putting hot pokers into the center of the knuckles.

One thing I did notice: body parts I had previously hurt very badly seem to hurt more: hurt my back at 13 years old - main location of pain, left knee - smashed on a rock driveway, knuckles - from punching, wrists - from typing.

Has anyone noticed the same: previously hurt locations seem to hurt more?

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@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

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I went through PT and unfortunately, cannot do the exercises because they hurt too much (even the stretching exercises hurt!) I have heard that yoga does help and improves the core muscles, have you tried yoga and if yes, how was it?

I have not had Ultram but what about Cymbalta? I have been taking it for years and recently increased the dosage for the fibro. Without it, the pain is unbearable. From the quick research I just did, others say that Ultram is like baby aspirin. The one warning about Cymbalta: it's hard to sleep because Cymbalta affects the serotonin levels in your brain so if possible, take it in the morning. My mother just started 10 mg for her diabetic neuropathy and it is helping. Just a suggestion, I am not a pharmaceutical rep, just been on way too many different meds over the last 2 years! :)

Oxycontin - didn't do anything for me
Percocet - Didn't do anything for me
Opana Instant release (Oxymorphone)- makes you feel very dopey and just want to sleep, does reduce the pain level. Currently taking on "as needed" basis, probably 5-7 times per week.
Opana ER (Extended Release) - I don't feel any side effects, currently taking twice a day.
Cymbalta - I LOVE! Just don't think it is the right med for my level of pain but if you have low seritonin levels, Cymbalta ROCKS! Currently taking twice a day.
Deplin - Helps Cymbalta cross the walls in the brain. Similar to folic acid when pregnant. Currently taking twice per day.

Please let me know your thoughts about the yoga.

Thanks!
Jen

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@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

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Hi, Barb,

I looked for FUSE Ointment but could not find it. Could you please provide where you found it on the internet? Would truly appreciate it!

Thanks,
Jen

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@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

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I just found this! I must have overlooked it. Sorry! 🙂 I saved your number..thank you so much for reaching out to me! I'd love to text you someday soon 🙂 when is the best time for you??

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@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

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No I'm not seeing ANY doc right now...I'm mad and frustrated with doctors that I've seen so far...so I'm taking a break!! 🙁

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@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 told my husband the same! 🙁
I have noticed VERY MUCH that old injuries (which I have a lot of!) hurt more now...well a change over the years. But I've been in THE MOST pain since I had my last child and during pregnancy even 🙁 she is 13 months old

UPDATE-
After having a nervous breakdown at the beginning of December and being hospitalized for a week. I am now getting the medical care and treatment that I have been looking for!!!
I am driving 2 hours one way to get it, but I finally found the doc that is AWESOME and willing to listen and she is very thorough and I am very confident that I am in the right hands FINALLY!! My pain in now being managed by taking Nurotin...600mg a day...Tramadol...and a few other non narcotic meds...im glad that I'm not having to take Vicodin to live through the day..although I know If I had the Vicodin I wouldn't feel much pain at all, but at least I can tollerate the pain most of the time now. I also am very aware that my emotions are linked to my pain...when I get upset my pain increases IMMENSELY so I try deep breathing and to stay calm..I know it will take so time to make this a reaction so I don't even have to think about it...but it will be well worth it!!
Thank you all for sharing your story and giving your advice!! It's so "nice" to know I'm not alone in this 🙂
My heart, thoughts and prayers go out to you all!!! <3

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I was told that I have severe osteoporosis about 9 years back. I was told that I will have to take calcium and vitamin D3 for life. I did not take for more than 60 days in first 2 years when I was trying to learn the basics of health on internet. After that I stopped all calcium and D3 and other diet related aspects. Nothing works for more than 7 days. Today I am completely pain free person. I have some experience and my own personal theories about diseases. Usually I am able to relieve a person of new found pain in a matter of 24 to 48 hours. Except the accident related.

During last 7 to 8 years I have been experimenting with drinking water and other fluids.

I have experience with a wide range of conditions - renal failure, disc issues, IBS, stomach pains, tingling, dry skin, Mouth ulcers, Blood clots, Prostate, sinus, cold and cough, cancer patients etc.

I have learnt through years as under -

One should drink water 1 hour before lunch and dinner. Restrict the water intake to 2 glasses a day. No other liquids during 24 hours. For diseased person suffering from any painful conditions including cancer - one should give up water and all other liquids for 24 hours to be followed by next 24 hours of 2 to 3 glasses of water in 24 hours. The water fast should be done once in 7 days. But as the condition improves one can do it on alternate days.

People doing water fast on alternate days should make sure to drink 6 to 8 glasses of ater once in 7 to 10 days.

Another sure shot solution to all pain related issues is -

Eat moderately on the previous day evening.

Next day morning after toilet - start drinking water and salt (1/4 ro 1/2 small spoon). Aim to drink 4 to 6 glasses during the entire day. Do not eat anything during the whole 24 hours. During this period the pain may increase. In that case limit ur water and salt intake to 1 or 2 glasses less say 3 to 5 glasses.

Next day morning stop all liquid intakes including water. Eat solid foods during the 24 hours period. But no water or liquid intake. No fruits or other things that are supposed to have lot of water in them.

This day or the next day u should experience high urine output. By evening you should feel complete relief from pain. But the next day when u start water intake and fluid intakes the pains may come back. But over a period of time when u keep repeating the first u will feel better.

Do not repeat the salt thing more than once in 1 month. I would recommend once in 2 months only. I believe that this will normalise the blood pressure as well. But I do not have enough experience to support this. Only data I have is of my family members. We all had normal blood pressures. We are 2 + 2. We did water and salt for about 2 months. Today we all have low blood pressure. Since doing the above kind of water and salt I am experiencing normal blood pressure or 80/120. Earlier it used to be 70/110.

I have only one experience to share on disc related matters - A person with disc lock / slip disc condition aged 55 years in March 2009 was advised to give up food as well as all liquids for 48 hours and to lie in the same condition (he was unable to move an inch. He could not lie on his side as well). He was constipated for a long time. In 12 hours he was on his feet. But he was advised to lie down and complete 48 hours. After 48 hours he was supposed to get his bowels cleared to join the office. Today after more than 32 months later he has not taken a single day off from his office. His real brother had 2 surgeries of his spine and is usually bed ridden.

I had 1 more previous experience with this person. He had terribly cracked heals. That was about 5 years before the above condition. I told him to start drinking 1 glass of water every hour. In next 15 days his heals were as good as his palms. I mean there was not even remote signs of cracks. He continued the same water drinking pattern and after 30 days the cracks were worse then before.

So after the slip disc experience I have advised this person to be without water for at least once in 1 month. But he does not do. But his heals are much better now. But not as perfect as it happened during the second experience.

Feel free to ask or share ur experience. Do not worry about respecting me. U can use the worst words for me if it back fire. But do it at ur risk. Legally I should say do the above under medical supervision.

I must add - Today I can smash the cemented wall with my nuckles with full force at least 50 times without feeling any pain.

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have you tried MSM a metasulphhate over the counter at the pharmacy. my feet had collapsed after my 3rd child and i couldn't walk a block with the pain. this completely cured me and brought back my very high energy level. today i no longer take it, i took it for 2 yrs. today i take vitD and capsule of acai berry every day. good luck.

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Have you tried alternative medicine? My chiropractor recommended some OTC medicines. They didn't really help me, but I understand they are very helpful to some. Also, what about acupuncture? I am getting ready to try that because I'm tired of hurting, too, and I've only officially had this lousy disease for 1 year. Also, anyone out there, what is your experience with Prednisone? I've just been put on it for a sinus infection, and tonight I'm in so much pain I just want to cry. I'm trying to determine if it's the medicine, or the sudden cold snap. Any thoughts on this are appreciated. Hang in there Fibro-sufferer... don't give up hope. We're all with you!

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@lovespiglet

Have you tried alternative medicine? My chiropractor recommended some OTC medicines. They didn't really help me, but I understand they are very helpful to some. Also, what about acupuncture? I am getting ready to try that because I'm tired of hurting, too, and I've only officially had this lousy disease for 1 year. Also, anyone out there, what is your experience with Prednisone? I've just been put on it for a sinus infection, and tonight I'm in so much pain I just want to cry. I'm trying to determine if it's the medicine, or the sudden cold snap. Any thoughts on this are appreciated. Hang in there Fibro-sufferer... don't give up hope. We're all with you!

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prednisone is a steroid and a serious drug! hopfully your on a antibiodic for inf. soak in very warm water for fibro if poss.

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