fibromyalgia ??

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sar85
New Member


Date Joined Oct 2017
Total Posts : 9
   Posted 10/12/2017 3:06 PM (GMT -6)   
Hi.i am 31 years old. Have had constant pain all over my body for months,muscles aches and joints hurt.i wake up all stiff abd have pains in my feet.i am always tired and my sleep is very on and off.i am always tired and generally exhausted.

My hair has also started to fall out at times.i get pins and needles and numbness in my arms and legs too.

I went to gp who did some blood tests which came back all clear.they lut me on amitryptiline tableta but they didnt help at all. Im still in pain every day its unbearable. I went back to gp again and she went through all my symptoms and has said its possibly fibromyalgia. She has put me on duloxetine tablets 20mg twice a day to help control the pain.

Does this sound like fibro?

Any advice please.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17773
   Posted 10/12/2017 6:23 PM (GMT -6)   
I bumped up your first post about this. You have a couple of responses.

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

Slowma
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 11/11/2017 10:27 AM (GMT -6)   
From the symptoms you describe, I would say, without hesitation, that you DO have fibromyalgia. I'm basing this on several factors --all your pain symptoms, the fact that all the testing indicates nothing else, the pain in your feet, your fatigue, the "pins and needles" sensation in your limbs, the stiffness. These are all exactly the same symptoms I experienced (and still do!) when I was diagnosed with fibromyalgia. The other tip-off is that you aren't testing positive for anything else since fibromyalgia is diagnosed partly by eliminating other possibilities such as MS, lupus, etc.

I also hate to tell you this but I was on Cymbalta (duloxetine) at a slightly higher dose than you're on for several years and it did NOTHING to alleviate my pain. (The best thing about it was that, when I discontinued taking it, I quickly lost the 50 lbs. I'd gained while taking it!) I've also tried Gabapentin (Neurontin) twice, Lyrica, Savella, Prozac, Skelaxin (a muscle relaxant), physical therapy, exercise, psychotherapy, heat, and pretty much anything that is "recommended" as effective for fibromyalgia pain, including all the OTC stuff and mild opiates like Ultram (Tramadol) and Vicodin (hydrocodone.) I've been to 3 pain clinics in 3 different states. At the one in Grand Junction, Colorado, the HEAD of the pain clinic told me when I asked for her "take" on fibromyalgia, "Well, some people just like attention." At the one in Boston at Brigham and Women's Hospital, a resident walked in, sat down and said he couldn't help me with my "back problem!" When I said I didn't have a back problem, I had fibromyalgia, he said that, whatever the case, he couldn't help me! (He also said he couldn't find my records which I'd had sent there; on the way out, I asked for them at the front desk and they were right there! Go figure!) At the most recent clinic in Big Rapids, Michigan, the doctor was completely disengaged, kept leaving the room to check on another, apparently more important, meeting and finally said that 90% of the clinic's patients had back problems and he didn't really treat fibromyalgia. And I'm sure there are some "treatments" I'm forgetting since I've had the fibromyalgia for over 24 years. The ONLY thing that I've found to be EXTREMELY effective, in spite of Web MD's declaration to the contrary, are stronger opioids. I now take MS-Contin (time-release) with Dilaudid for breakthrough pain. I've been on these for several years, have zero side effects and have NEVER needed an increase in dosage. These medications have given me my life back, although abusers and addicts do everything in their power to wreck that. Of course, now that the DEA and other agencies are determining who is in pain and who isn't and who deserves pain relief and who doesn't as opposed to one's own doctor, I expect to eventually be back to square one in the suffering/not having a life department. I wish you the best--perhaps other things will work better for you than they did for me, keeping in mind that the company that makes Lyrica found in their own research that it helps only 20% of patients, SOME of the time. I wish I could be more encouraging.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2198
   Posted 11/12/2017 4:06 PM (GMT -6)   
Some do need the stronger pain meds, but others do not do well on them either..

Anti inflammatory helps me, even though my bloodwork says its low.

I use some low dose tramadol, it is not a true opiate..

Topical pain relievers help me a lot..like pain erase, biofreeze

Heat helps , stretching helps.

There are different kinds of fibro. My sister and i have different kinds..ours is considered genetic.

Each of us has to find what works for us...we all responds differently

You can get help, but its trial and error

Lj

Slowma
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 1/7/2018 6:10 PM (GMT -6)   
Hi Ljm2014! Your post jogged my memory--I forgot to mention that I've also tried Tramadol (also known as Ultram), Lidocaine patches and other topical "pain relievers". The Lidocaine patches give SOME lessening of pain but only locally (wherever they're placed), and now my insurance won't pay for them because they're not "indicated" for a fibro diagnosis (And they're expensive!) I also do use heating pads which, again, give SOME relief but only to the area where they are placed and only when they are on those areas. Since I can't figure out how to live my life walking around while covered in heating pads, it's a VERY temporary fix! And yes, stretching my legs before I stand helps me to get up without falling over and sometimes use my arms without dropping things. However, while it stretching temporarily allows me to move, it doesn't get rid of the pain. I take a prescription anti-inflammatory daily for arthritis which, thank God, helps my arthritis but does NOTHING for the fibro pain.

Absolutely, it's true that everyone responds to various "treatments" differently. I'm thrilled when I hear that someone has found something relative simple that helps them--or ANYTHING that helps them. Being on opioids is a true nightmare--not from the meds (since, aside from the pain relief, I have no other effects from them) but from the accompanying judgment from anyone who knows you take them. This includes doctors who aren't mine and don't know my situation or everything else I've tried previously, pharmacists, the DEA, legislators, family, friends, fibromyalgia patients who have mild and/or simpler cases that respond to mild or simpler treatments and think I should too, and total strangers. After 24 years of horrible suffering and trying every treatment ever suggested or prescribed to me by both doctors and "helpful", ignorant non-experts, (and I haven't mentioned EVERYTHING I've tried), a woman at my church, who had never met me, asked if I had ever considered trying Tylenol. TYLENOL!!! I felt like saying, "Oh my goodness, what a brilliant idea! All the treatments I've tried over 24 years, including some opioids, didn't help the pain but I never thought of TYLENOL!" I'm not recommending ANYTHING for ANYONE. I'm just stating what did and didn't work for me. I didn't wake up one morning with fibromyalgia symptoms and go straight to my doctor asking for morphine. Obviously, I spent years trying the multiple treatments and medications I've mentioned (plus many I didn't mention) before one courageous doctor gave me the opioid prescription that has helped me. I definitely do many other things to keep my need for those as low as possible. But if my choice is to spend the rest of my life sitting in my recliner, moaning in pain, or take the opioids and live a shorter life without the severe pain but able to visit my children and grandchildren and interact with them, travel with my husband, do at least SOME household chores--in other words, have a LIFE--I'll take the opioids. The aforementioned "judgers" can't seem to grasp the fact that QUALITY of life may have more to say for it than LENGTH of life. What good does it do to live an extra 20 years if it's spent writhing in pain?

almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 2570
   Posted 1/12/2018 6:32 AM (GMT -6)   
Hi sar, be careful of certain medications and their side effects. There was a period in my life where I had complete trust in my doctors. I was tried on so many types of medications which could have worsened some of my conditions.

Now if I experience side effects and get no relief, I go off of them without calling my doctor if a reputable website says I can do so.

What helps me deal with my over fifteen years of having this health condition is healthy eating, over the counter pain relievers, twice a day stretching, and staying as active as I possibly can. Plus going to sleep around the same time each night. Plus I try not to over exert myself.

Good luck to you.

I don't think any reputable website would suggest its fine to go off your medication without your doctor's knowledge. It would leave them open to lawsuits if something went wrong. Your doctor should always be notified. This way they know exactly what you are taking.

My Mom decided to stop her blood pressure medications on her own, never told her doctor, and she ended up having a stroke.

Sherrine

Post Edited By Moderator (Sherrine) : 1/12/2018 1:44:15 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17773
   Posted 1/12/2018 3:00 PM (GMT -6)   
You should always contact your doctor if you want to stop a medication. You could possibly run into more problems if you don't. Only once did I stop a medication on my own...a blood pressure medication...but it was on a Sunday and I couldn't reach my doctor. I called the first thing Monday morning and went in to see him. He agreed with me and i haven't needed blood pressure medication since. But, I know I did the right thing by contacting him and I have peace of mind because I was checked out.

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

Slowma
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 1/14/2018 6:40 PM (GMT -6)   
I also do all the things recommended by other members--use an anti-inflammatory, stretch frequently throughout the day, stay as active as I possibly can, go to sleep around the same time each night, and try not to overexert myself. That's where treatment STARTS--along with some other simple things. I also tried every "simple thing" I could for 7 years, all the while dealing with ever-increasing pain and inability to sleep. By the time I was 10 years into fibromyalgia, having been a totally compliant patient and done all the things "recommended" by doctors and many things recommended by other patients, I was in agony, completely exhausted, dangerously sleep-deprived and on the verge of suicide from the unresolved and worsening agony of this hideous "syndrome." My sister also has been diagnosed (I THINK) with fibromyalgia but her experience of the condition is so mild that she has continued to work full-time, travel the world, and pretty much do anything she wants. We must always keep in mind that OUR experience of the illness is NOT everyone's. I suffer enough; the last thing I need is other people with mild cases acting like fibromyalgia is no big deal if you just do a few simple things. What I do may not help or be necessary for others and/or it may be much too drastic for them. That's great!!! I envy you! But please--don't respond to my suffering and my need for much more intense treatment by telling me how simple it is for you to find relief. To those just beginning this journey--I hope that journey is as easy as possible. Just remember that it's YOUR journey.

Regina Davies
New Member


Date Joined Jul 2018
Total Posts : 6
   Posted 7/12/2018 5:53 AM (GMT -6)   
One of the reasons caused that is maybe your sleep mode. If you constantly sleep restlessly and discomposed, often lose a deep phase of the sleep and feels slumber during the day.
Probably your mattress too rough? I have found a small guide on this topic , try to look through and pick one if you like that! Healthy sleep is very important for your next day, don't forget about that.

Hi. Regina, and welcome! I had to take your link out because it was selling something. This isn’t allowed on the forum. But, I copied the list of mattresses and their qualifications and posted them below. Thanks for understanding!

Sherrine

Post Edited By Moderator (Sherrine) : 7/12/2018 8:40:53 AM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17773
   Posted 7/12/2018 9:40 AM (GMT -6)   
Hi, Regina, and welcome! Your information on mattresses is good but I had to take the link out because it was selling something. This isn’t allowed on the forum. So I copied the important info and the members can see it below.

1. Layla Sleep Memory Foam Mattress (Best All-Around Mattress for Fibromyalgia) 10.5’’ memory foam mattress with 2 firmness levels: medium plush and firm; features copper-infused foam dissipating heat and relieving pressure points; 120-night trial period and lifetime warranty; ranked Best Memory Foam Mattresses 2018 by Forbes Magazine

2. Ultimate Dreams Eurotop Latex Mattress (Runner-up) 12.5’’ latex and memory foam mattress with customized and interchangeable firmness and thick foam base for durability; great customer support

3. Lull Mattress (Best for Cool Sleep) 10’’ gel-infused memory foam mattress with medium firmness available in 6 sizes, with low motion transfer; recommended by Consumer Reports

4. Hyphen Mattress (Budget Pick) 10’’ memory foam mattress, firm, available in 6 sizes; very comfortable and good at dissipating heat; works well on almost any bed

5. Bear Mattress (Best for Support) 10’’ memory foam mattress, medium firm, with the Celliant technology in mattress cover for increased blood flow and enhanced pain relief

6. Amerisleep AS3 12" Memory Foam Mattress (Best for Heavy People) 12’’ memory foam mattress with medium firmness, thick and durable; features the Celliant technology improving blood flow; available in 7 sizes

7. Leesa Mattress (Most Popular) 10’’ memory foam mattress, firm, but does not need a mattress topper; available in 6 sizes and good for all sleep positions

~~~~~~~

Do write an introductory post and tell us a little about yourself. This way you get more responses. You can get lost posting on another thread for the first time. This is a wonderful forum and I think you will like it here. Yes, we do have kind members.

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

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17773
   Posted 7/12/2018 3:35 PM (GMT -6)   
I’m surprised that all of the mattresses include Memory Foam. I tried a memory foam topper and hated it. I couldn’t t move and was straining my muscles trying to get out of bed!

I have a posturepedic pillow top mattress. I need the support. I have added on to that a foam egg crate from Walmart and then put a fiber bed, which is like a feather bed but you can wash it, on top of the egg crate. I got the fiber bed at Bed, Bath and Beyond. This gives me the support I need and the softness my body craves. And it didn’t cost me a fortune. That could make me lose sleep too. 😂

But there are members who swear by the Memory Foam mattresses, others like Temperpedic or Sleep Number. I guess it’s trial and error here too.

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
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