Me and my Fibro

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midnitewolf
Posts: 5
Joined: Sat Sep 21, 2013 1:23 am
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by midnitewolf on Thu Oct 17, 2013 6:02 pm

Me and my Fibro

I have Fibro-myalgia.
Fibro is starting to get more recognition and more research is thankfully being done now. But there is still a lot that is unknown and not understood.
I am lucky, in that this year I have a great GP and I am now in a specialist pain clinic where I regularly see a pain psychologist.
Unfortunately my case is slowly getting worse. Just as I think I cannot cope with any more, I get more.
My pain psychologist met with me and my GP today and we are exploring several options. One came about in quite a strange way. I had an endoscopy recently and because of my hyper sensitivity to pain, it was done under a full general anesthetic. I was completely pain free for the next 15 hours. So, my specialist pain Dr is looking at what was given, thinking out of the box, to see if there is a similar weaker tablet that may help.
We are also considering a sleeping pill to give me a better quality sleep.
I am so sick and tired of being sick and tired. I hurt all over. It feels like every cell is screaming. I have had this since (another common factor in Fibro, traumatic injury in the past) I hurt my back and had to lay flat for 6 weeks. That was 20 years ago.
I ahve volunteered to do any trials or research to try to find out more about how it all works and how to treat it. But I have tried a lot of different things with no luck yet.
I will let you know if I find anything effective. I would recommend having a general anesthetic!! But I guess that is not an option for daily pain relief!!
All the best to my fellow sufferers. At least it is starting to be recognized. I have had a lot of grief over the years, being told I am lazy or bone idle, work shy. Sponge. Fraud. This Government, in my opinion have made that even worse, but I won't go in to politics here!!

midnitewolf
Posts: 5
Joined: Sat Sep 21, 2013 1:23 am
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by midnitewolf on Tue Nov 05, 2013 3:03 pm

Re: Me and my Fibro

Even the tips of my fingers are hurting today. :?
Anyone found ANYTHING that helps control the pain?

midnitewolf
Posts: 5
Joined: Sat Sep 21, 2013 1:23 am
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by midnitewolf on Fri Nov 15, 2013 1:49 am

Re: Me and my Fibro

Thank you.
I do wonder a lot. I have friends with Fibro. Some lead a very active life.
I do not know how it works. Compared to those with very active lives, I feel lazy. I wonder if they feel as bad as me. Do they just as bad as me but are stronger? It seems to have really varying degrees. From friends who work, have kids, have active dogs that they walk for miles most days. Have grand children. Have parents. But me, I have trouble just getting out of bed.
Today has been a hard day. It feels like I have pulled the muscles in my thighs. Then it felt like I dislocated one shoulder reaching for something (happens a lot) Then it felt like I pulled a muscle in my other shoulder just brushing my hair (what's left of it...... but that is another forum....) So, I was left in agony with no arms or legs. I felt so useless. Then I think of my active sufferers. Then I think of my friends with worse mobility than me. I feel awful for moaning, when they are left so much worse than me. I feel bad for feeling bad. Then I think of the very active sufferers, then I feel bad for not being up to doing what they do.
I am trying to learn and understand more. But I read a few lines, that gets lost in the brain fog. I read the same lines over and over, but it just vanishes in the fog.
I am on over 30 tablets a day. I think it is 5 different pain meds, 2 different anti depressants. An Asthma pill. A pill to help me get to sleep.
The only thing that worked 99% was apparently the same drug that Micheal Jackson died from. I had that as a general anesthetic. I was pain free (and a little dopey!) for 12 hours.
Unfortunately, it is not available for use outside of theatre.
I see a pain psychologist. But the pain clinic here is overwhelmed. The waiting list to see the pain medical Dr has a year long waiting list to get on the waiting list!!
I have probably already said all this, so I will shut up now!!
I love them S.A.D. light glasses in the competition by the way!! Absolutely brilliant idea.
Feel free to moderate anything if needed. I don't know if mentioning the drug that worked was a good idea or not. But it is true.
I will head over to where you advised. Thank you.

Nellysierra12
Posts: 39
Joined: Mon Oct 21, 2013 10:25 am
Location: USA
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by Nellysierra12 on Tue Nov 19, 2013 1:40 pm

Re: Me and my Fibro

With the right combination of exercise and medication, you will be able to manage the pain and fatigue pretty well.

midnitewolf
Posts: 5
Joined: Sat Sep 21, 2013 1:23 am
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by midnitewolf on Tue Nov 19, 2013 3:12 pm

Re: Me and my Fibro

Hmm, well, with all the years I have suffered, I guess between myself, my G.P. My pain psychologist, specialist pain Physio therapist, Pain nurse and pain specialist medical Dr, well, I can only guess that we have not managed to find it!! Wow, if only I knew it was that easy :shock:

jayniegray
Posts: 1
Joined: Mon Nov 18, 2013 2:25 pm
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by jayniegray on Tue Nov 19, 2013 4:27 pm

Re: Me and my Fibro

Dear All.

I am sat here in tears to finally find people who feel the same as me and can relate to how i am feeling.
I had a car accident seven years ago, mine triggered fibromyalgia, although I was finally diagnosed in September this year, so for seven years I and my partner have been battling the medical profession, I have been told its all in my head, so I went to see a psychologist, to stop moaning, to you are being lazy, if you have the pain that makes you physically sick, you have the pain that every bone, muscle and ligament in your body hurts then tell me again nothings wrong.
After being on Oramorph for the second time for a bad episode no doubt due to the change in weather, which is what most doctors say, I now have changed to a good a very good GP/pain management specialist, who has admitted that she doesn't know that much as every one is different, but she is willing to learn with me what works and what doesn't, I guess you could say I'm her Guinea pig.
I have just finished a three week course of Lainecaine infusions consisting of anaesthetic, Ketamine and Vit D. Which has helped with my sleeping I now only wake up about 2-3 times a night instead of 5-6 which I find is a great improvement, I do have pain but i'm not being sick and can walk although not very far but I don't feel quite so useless as I did.
Thank you for letting me get some of my feelings out.
Jaynie.

AnnieA56
Posts: 1
Joined: Wed Mar 26, 2014 6:54 pm
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by AnnieA56 on Wed Mar 26, 2014 8:23 pm

Re: Me and my Fibro

My Fibro began 5 years ago after a virus causing Post Viral Inflammatory Arthritis. I ended up in hospital with BP of 212/119, abnormal blood and thyroid tests but no symptoms to speak of apart from swelling on the inside of my elbows. By the time they got my BP back to an acceptable level the pains had started to appear. I had x-rays and ultrasounds on my knees, hips and elbows but nothing abnormal could be seen. The rheumatologist was now involved who ordered a full body scan where I was injected with a radioactive material although this was less than I received during one x-ray. This showed arthritis in my right hip but nothing else. The fact I could still bend over and touch my toes even though my body was screaming in pain was a puzzle especially as I have a weakness in my L4, L5 lumbar spine plus I have since been diagnosed as hypermobile which often goes hand in hand with fibro and makes your muscles more and more tired as the day goes on. The rheumatologist prescribed Gabapentin and Tramadol to help the nerve pain and Amitriptyline to take at night to relax my muscles and help me sleep. I was referred to someone else about my thyroid as an out patient but 4 weeks later all my blood results were normal so I was discharged from him. I was referred to the pain clinic but all they did was tweak my prescription until my pain was under controllish and discharged me when they couldn't do anything else.
My prescription now looks more like an essay as I keep tearing muscles etc, most recently I had Tendonosis of my right shoulder. The ultrasound for that showed mt tendon looked like a frayed rope. I was prescribed Diclofenac for that and a muscle relaxant to enable me to do my physio(which didn't work). After a lot of research I asked for and was prescribed Dantrolene which does work. I also take Paracetamol and Ramipril (for BP) and use Hypromellose eye drops.
My Fibro changes from day to day and I can't make plans in advance as I never know how I will feel. Changes in the weather also seem to aggravate it.
I have now been discharged by every specialist and am under my GP's care. (what care?) I never get to see the same GP so when I go to the surgery I spend half my appointment time going back over the past 5 years of my medical history (Are they illiterate? Can't they read what is in front of them?) to then be told by some jumped up locum that I am depressed and would I like some Diazepam. I am not depressed just frustrated and angry that no one person can take responsibility for overseeing my treatment. There is no continuity and no changes are ever made unless I go in with my evidence from having spent hours reading topics here, on Arthritis Research, Patient and Netdoctor and other reputable sites.
I know GPs cannot possibly know everything about anything but surely there must be somebody out there with the knowledge about these conditions which could be tapped into.
My lovely husband wears himself out working full time then having to come home and start again with the housework as I cannot lift. I work part time in a shop although on much reduced hours compared to before I was ill. I enjoy my job and would rather be there where I have lots of people to talk to than at home alone all day. I have four adult children although only one is still at home. One of my daughters takes me for a massage or wrap plus facial in a spa once a month which I love. I also go to a therapist for a specialist massage tailored for my condition every fortnight. They are so relaxing which is half the battle trying to relax when your body is screaming at you.
Today I had an assessment by the Talking Therapies service for my suitability for CBT. I spent the best part of an hour going through my questionnaire and just talking about how I felt and although I did get upset she understood what I was going through and why I feel the way I do which did make me feel better. The result was that I will be getting help from them to cope.
Boy does it feel good to get that all out.

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