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Am I alone??
11 Replies
jenny bawden - March 8

I have struggled for over 15 years with Fibromyalgia, my symtoms at best: are pain and ache over the whole of my body, my joints are stiff, I wake up in the morning more tired than when I went to bed. Sometimes I am glad morning has arrived so I can stop being 'so tired????' I have put on so much weight but seem unable to lose it (poss the steroids I have been on for years) At it's worst: I can barely walk, the pain in my hips (or wherever it chooses to materialise) is unbearable, the depression, hating myself for being 'fat and lazy' because I am unable to move easily, and the fibro fog.... Oh God the fibro fog !!! I transform at the drop of a hat from being an extremely intelligent person with her own business into someone who can barely think what she is trying to say to a client. I look out the window and can't think of the word garden!! I end up playing something like charades with the person I am trying to speak to.
I recently had a bad attack which meant I could barely walk... so the doc's just promptly upped my steroids... just as I was starting to lose a tiny amount of weight.
No one seems to want to know how to helpme, I just get given anti inflamatory and steroids !!
I think a lot of people on this site are in the USA, there doesn't seem to be a lot of help in Suffolk in England...
Can anyone cheer me up please :-)


JoniB - March 8

With Fibro, there are good days & bad days. When you have a good day, don't overdue it or you will pay for it. I find esp the 2nd day after working hard it hits me bad with pain. If there is an activity I plan to attend, I try to "bank" energy for several days b4, then plan down time several days after. When you are tired, sleep. Don't make let people make you feel guilty for being "lazy". They do not understand! Fibro will not cripple you (altho there may be days u feel like it) & it will not shorten life span. Do things that are nice for yourself everyday! Little things that don't have to cost money. Try to stay relaxed, less stress, upbeat if you can (it is tough!) Knowledge is power, research as much as you can. Many try to alter their diet to eliminate processed foods, pop, tomatoes, citrus, sugar,etc & say that it helps. We understand what you are going thru. I hope you have better days & learn to adjust to live with this terrible disorder/condition/illness. Sorry for your pain, no fun to live that way... Just know there are people who care & do understand! Hugs...Joni


jenny bawden - March 9

Thank you JoniB, just to know that there are people out there is such a big help (Ihave only just found this site.. or maybe it has just found me??) Living alone and working alone as I do, life can be tough for us all, without having to live with Fibro. I found it interesting to hear you say you 'save up' your energy. That is how I often feel I cope. Somedays I look at my work load and know how full 'my energy bottle is'. and pace myself accordingly. I used to think it was just my imagination It is strange it's almost like looking a physical bottle. It's all ok until someone throws another 'can you just do this' or the car breaks down... and then the whole system falls flat. I have got t o learn to say 'no' . Many thanks Jodi... I wish you all you wish yourself and more.


JoniB - March 9

Hello Jenny. What makes you feel better? What helps for me is:
rest, but even that hurts at times , pain pills, muscle relaxers, anti-deppressants, anti-anxiety medication, deep tissue massage (if I can get my son to do it), hot baths, electric blanket and heating pads will provide some relief for the pain; when the pain gets real bad I find I sleep a LOT. But nothing yet has really helped. I just started seeing a rheumatologist to help me with the chronic myofacial pain/fibromyalgia. He put me on Tramadol/acetaminophen (Ultacet), 1,000 IU of vitamin D per day, told me to take some magnesium & zinc. He said it will take a while to get better, I didn't get that way overnight. I am also taking a lot of other meds. Some of these meds have also caused me to gain weight, but the Dr. told me not to worry about that right now, but try to do more stretching & exercise ( I don't mind stretching but hate to exercise!) Do you have good insurance? I'm glad you found this site to get some support or advice & know that you are NOT ALONE!


JoniB - March 9

Fibro fog, me too. That med is (Ultracet). I quit work as a cosmetologist with my own business in my home, December 2004. I have applied for Social Security Disability and have been denied twice. I have appealed again and am awaiting a hearing in front of an administrative law judge this summer for SSD. I have secured an attorney for that and have been doing the paperwork. I still want to work 10-15 hrs per week part time, as I am able, and hope to get the salon officially open in the future. I hope that you are feeling better. Joni


Iinda - March 27

Hi jenny. I am so sorry you are suffering so terribly. Do they have you on steroids for the fibro? I have never heard of this. That is so incredibly hard on your system. Try to give yourself a break & don't blame or hate yourself! you are not lazy, you are ill & doing your best to make it through each & every day. Maybe try doing an internet search or call directory to see if there are any fibro support groups in Suffolk. Best of luck to you dear!


Iinda - March 27

And no... you are NOT alone :)


jenny bawden - April 9

Hi Joni, Thank you so much for your support, I have been amazed at how everyone rallies around people on here, it brings me to tears sometimes, that's another thing... emotion !! some days I could cry buckets... what's that all about??? I do try to rest and not 'beat myself up about it' . I am work for myself as a holisitic and beauty therapist and also work in an office some days just to help with the mortgage repayments. The girls in the office are all young and healthy and I'm sure they just look at me as if I'm 'old and doddery' (57) I try hard to take in new training etc but some days it just sails over the top of my head. Which is REALLY annoying because I am usually very intelligent. I find stress makes things worse, and ofcourse we beat ourselves up and cause stress and need to rest and beat ourselves up etc etc. Hugs to you Joni and everyone else who comes on here. I am going to do some research also. to try and find something and someone else who will help me with this, as I don't want to be on steroids anymore. Oh yes Joni... the exercise thing.. I'm with you on the stretching .but the exercise... I try to do some and find I am ok for a couple of weeks and then my body breaks down and I find another part of me refuses to move properly, so I am further back than I was before I started exercising haha.. Jenny


ladypuddle - April 24

there are people in the UK there will be a support group somewhere nearby its worth googling Fibromyalgia Association UK and STIFF UK. I am in North Scotland

I'm 30, but was diagnosed at 21 whilst I was at UNI have not been able to work much since and I am about 4 stone heavier but have also been pregnant twice


olivian - April 25

hi jenny be sure to check out your calcium levels. The symptoms of fibro are almost identical to parathyroid disease which is found with a high serum calcium level...check out and dr jim norman.


jlh - May 4

Hey Jenny
I too feel very alone with this dreaded disease. I am at the point where I feel it has taken over and contolled my life and my family and friends and work are suffering becauses of this. I am on a mission to find a cure!!!!! I need to to get my sanity back.Will let you know if anything works. Meantime chin up ....thats what Im trying to do but my goodness its hard


Fantod - May 4

Hi Jenny - I just read your post and I am sorry you are having such a hard time. We all go through this to some degree or another so you are NOT alone. Steroids are not generally used here in the USA for FMS. If you have read any of the other posts, Amitriptyline or drugs like it are what is primarly used. I have a friend in the UK who uses Amitriptyline so it must be available. I think that there is some information about these medicaitons readily availble on the web and this site. Docotors are only human and if they have been treating you for some time they may not really "see" how much difficulty you are experiencing. I am also aware that the national health system in the UK is not the same as what we have available here. I find that being an active participant in my care and bringing print outs of information on treatment (new or otherwise) from the web to ask about is helpful. If nothing else, it may make the physcian think that maybe they need to better educate themselves. Steroids are certainly not going to fix your fibro-fog. I am sending you a big hugs and best wishes fro better days ahead.



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