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Posted By : TAS-MS/lupy - 2/25/2017 10:23 PM
I am new to this site so here goes: In 1993 I was diagnosed with MS. I was only 20 years old at the time and decided against doctors advice to not go on any meds. I felt my symptoms were not bad enough at that time to subject myself to liver or kidney problems due to the meds. Over the last 20+years I learned to live with and deal with my MS. I was a very energetic(I had my days however, esp in the summer)hard working, self motivated person who just like to go,go,go and "raise the bar" at my job as high as I could. No one could believe someone with MS(mine very mild) could be that strong, have that much energy and work in such a fast past factory! That is until summer of 2013 when all that started to change. That summer I was hit with a huge amount of pressure and stress due to some life changes and almost worked myself to death! During that time I was getting new & different symptoms daily. I realized a lot of the symptoms were my MS but I also knew something else was wrong! A long story shortened, after weekly trips to different doctors because all they wanted to do was say it was my MS in Feb 2016 I tested as they told me "antibody" positive for Lupus!!!After that diagnosis and some new meds things for me continued to get worse. Currently, a shell of the person I once was, I had to take a medical leave from work, I can hardly get out of bed without tears from the aches and pains let alone go to work. On Feb 15th I was told my Lupus was quiet and that I have Fibromyalgia!! HELP, where do I go from here?? In May I will lose my job of over 15 years if I do not return to work!!

Posted By : bcfromfl - 2/26/2017 12:42 AM
So sorry to read of your health challenges! I certainly empathize, as I've been struggling with CFIDS along with complications.

Low-dose naltrexone has been mostly used for ME/CFIDS patients, but there are those out there with lupus and MS who have been helped as well. I started a thread on LDN over on the Chronic Fatigue forum: www.healingwell.com/community/default.aspx?f=15&m=3786777 I completely understand your hesitation about medication, but LDN is about as benign as they come.

Perhaps something to consider. Best wishes!

Bruce

Posted By : Sherrine - 2/26/2017 7:51 AM
Hi, Tas, and welcome! I'm so sorry about what you are going through right now. Did your doctor offer any help or did they just give the diagnosis and send you home? If they did that, I'd look for another doctor!

There are various medications that have helped people with fibro. The three main ones that are used are Cymbalta, Lyrica, and Savella. Gabapentin is another medication that some have had success with. I say "some" because what works for one doesn't necessarily work for another with fibromyalgia. It's more of a trial and error type thing.

I didn't want to use medications like those so I decided to try over the counter things and they worked! I only take one prescription medication for fibro. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin (generic is methcarbomol and I use the generic form). I don't have to take a lot of the Robaxin so I don't get side effects from it. I actually took this 30 years ago for back spasms and it worked beautifully for me. It still does!

Laying in bed is about the worst thing you can do with fibro. It will make you stiff as a board and have more pain...as you are finding out. Start doing stretching exercises and get the blood moving and get the muscles moving also. Start walking around the house and then venture outside. I walk daily as a gentle form of exercise. (Yoga and swimming are a couple of other good gentle exercises). It's been proven that exercise helps with fibro pain. When I started walking. I only could go four houses down in my development and had to turn around and head back home if I was going to make it. But I didn't quit. I went out the next day and was able to go a little bit further. I now walk at least a half an hour a day along with all the walking I do around my home and gardens. Do try this. It has helped many members.

I mentioned magnesium malate and vitamin D3 above. Many are deficient in these and that can cause more pain. I have links in Fibro 101...the first thread on the forum...with info about these and how they work in the body. Magnesium malate is found in apples but I would have to eat a bushel to get what I needed. Some studies have shown that this particular form of magnesium has helped fibro patients. Again, many members have been helped by these.

All of Fibro 101 is good so do read it. You will learn a lot there. There are even some stretching exercises that can be done sitting down that you might use also.

PLAN on being back at work by May...maybe even April. The worry and stress being caused by thinking negatively causes you more pain. From what you told us, it wouldn't surprise me if your stressful situation caused fibro to rear its ugly head. Worrying has never helped anyone one iota! But thinking positively has helped many...me included. Take one day at a time and start moving forward with your life. You will feel better for it.

Start looking at your blessings too. I remember a time when my finances were in the dumper and I thought I was going to have to sell my house. The only thing that stopped my tears was getting out for a walk and looking at all the beauty all around me. It brightened my spirit and I had less pain by the time I got home. I also had more energy! Give it a try.

In Fibro 101 there is a great link about how to maintain a positive attitude when you have chronic pain. This should help you too. Set doable goals daily and when you achieve them you will feel better, also. It's bugging you right now that you think you can't do things but you really can do more than you know. I try everything and have lived a full and enjoyable life in spite of this illness. I realize you have other illnesses added on but most of us do. I have several painful autoimmune illnesses along with having fibro.

Many here see a board certified rheumatologist to help with fibro and other illnesses. You might consider this if your doctor hasn't offered any help for you. Your doctor, it seems, hasn't offered you any hope and that is not good for you...or for anyone! A good doctor will work with you to find what helps you get back in life.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Do let us know how you are doing because we do care about you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Ljm2014 - 2/26/2017 9:37 PM
Hi,

Its true that we do need to move..start with stretching, our muscles tense and get tight easily..the tighter our muscles , the more pain we have.

I cannot tolerate lots of meds, so i had to find other ways to feel better.

Topical pain relievers, like pain erase, as an example , help me with pain issues

I also use pain relief devices such as m.e.n.s, light relief , etc.

It certainly takes some trial and error to find what helps each of us.

We also have to advocate for ourselves with our doctors.

Many of us have more than one issue we are dealing with, but most of us can get help as well as help ourselves.

Lj

Posted By : TAS-MS/lupy - 3/5/2017 4:51 AM
Thank you for replying, every little bit of information helps. I need to clarify a few things because I think I might have been a little misleading. I have been on some med's just not for my MS. I have a primary doctor, neurologist and rheumatologist and this is what they had me taking. hydroxychloroquine, prednisone(as needed), Cymbalta,flexeril, zolmitriptan, folic acid, vitaminD, furosemide and lidocaine patches. Six weeks ago I went off all Meds because I felt I was not getting better just continue to get worse so I am going to new specialist and wanted to be able to start fresh. I swim 3 times a week and walk at least 4 days a week.

Posted By : luwong - 3/9/2017 12:15 AM
I can help you, I also had the insane pain of fibromyalgia not able to get out of bed or even move. I am now pain free. Is there an email to contact you?

Posted By : Sherrine - 3/9/2017 7:10 AM
Luwong, if you have this "miracle" for fibro, why aren't you sharing it with everyone...especially doctors and researchers?

TAS, it's not a good idea to give out email addresses and I do delete them out of a post because anyone with a computer...not just members...can read it. It's for your safety.

Also, do heed our rule number 4. It is important.

4. Use good judgement. NEVER rely on information or opinions exchanged to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.

This is for your safety also. Thanks!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 3/9/2017 6:21:41 AM (GMT-7)


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